My Grammy made the following journal...

13! That's how old you would be! You would be a teenager, fighting with your mother pleading with your Daddy and hopefully confiding in with your Grammy. Your Papa would be still seeing you as though you were still 4 or 5 needing him to protect you from the evils of this world and you would take comfort in that. Gideon and Hayden would pestering and teasing you about boys. Trinity would look up to you and want to be just like you. Ben? Well Ben would be goofy little Ben and make you laugh.
There's still not a day that goes by that I don't think of you, yearn for you, hurt from missing you.
Now I can only imagine what life would be like with a teenage granddaughter.
I see other 13 year old girls and wonder, try to picture what you would look like. Tumor free of course! NF free of course!
But that wasn't meant to be your story or my story.
So I go back in my mind and re-treasure every moment, every giggle, every hug, kiss and every day with my La La as I called you.
Happy 13th birthday La La love, Grammy


Princess Buttercup're 11 now. Happy Birthday Honey!
My, how time goes by so fast.........
Miss you kid!!!!!!
Love, Daddy, Mommy, Papa Bear, Grammy, Memere, Pepere,
Gideon, Hayden, Uncle Chad, Trinity and Ben Jammin'


Honey, Honey, Honey, you're ten years old!

Happy Birthday Princess Buttercup!

Tea Party in Heaven for....EVERYONE!!!!!!!!!

Miss you sooooo much, and love you soooo much, that I am like a junkie!!!!!!
Love, Daddy, Mommy, Papa Bear, Grammy, Memere, Pepere,
Gideon, Hayden, Uncle Chad, Aunt Dani, Trinity and Ben Jammin'

Extra, Extra, Read All About It!

Happy Birthday Princess Buttercup!

Honey, Honey, Honey, we sure miss you!
Love, Daddy, Mommy, Papa Bear, Grammy, Memere, Pepere,
Gideon, Hayden, Uncle Chad, Aunt Dani, Trinity and Ben Jammin'

Hi everyone,
Well, we are coming upon our 4th anniversary!
How can that be? 4 years and yet it feels like yesterday.
Bethany would be 8 yrs old, going into 3rd grade.
What would she look like?
How would her voice sound?
She had such a cute little nasally voice.
Would she be a good student?
She was so smart!!!!!!!!!!!!!!!!!
I know her little brothers would drive her crazy! Gideon and Hayden are so busy and she was so calm. Her Cousin, Trinity, would bring her some solace and now she has her new little Cousin, Benjamin, that I'm sure will side up with the boys! 5 Grand babies! Wow, what a thrill!
Monday, we will have our annual BBQ at her grave.
If anyone wants to stop by, you are more than welcome!
We will have hot dogs and chicken nuggets and chocolate milk, a few of her favorite things.
Renee said the theme this year is Hawaiian.
I think because of a cute little Hawaiian outfit Papa and I bought for her at Disney World.

This time of year is so hard, I always remember our Bethany the way she was, so vibrant, so happy and so full of love for anyone she met. Gideon is like that too. He is getting old enough to start asking questions about his Sissy. It's such a delicate subject of trying to explain where she is, and that God really is a loving God. Good grief, we adults don't fully understand it, how can a 4 yr old? But he seems to have a good grasp of who she was and that he really did have a sister. He talks about her all the time and fully knows her when he sees her pictures.
Sometimes I wonder did he meet her? Did Hayden meet her?
Do babies have a better understanding of God and life than we do?
So right now I'm feeling a little melancholy, remembering a little girl that touched so many hearts.
A little girl that I waited all my life for (being a girl with 4 brothers and 2 sons).
I said that to her all the time, "I waited all my life for you, and here you are , in my arms".
Now in my heart, etched there for ever and ever.
Oh God, how lucky you are to have my beautiful Bethany there with you.
Tell her Grammy loves her and give her lots of hugs and kisses for me.
.....and Papa Bear! (I snuck this in while Grammy wasn't looking...shhhhhhhh!)
Love, Di

Bethany's chair is at Give Kids The World!!!!!
Yeah Bethany!!!!!!
Now, other children can be blessed because of our Princess Buttercup!!!
And look......her chair is in Bethany's Garden!!!!!!!!!!!!!!!!!!!!!!!!!!!

Thanks to Bethany's Mom and Dad (Renee and Scott)!!!!!!


Princess Buttercup,
Today, the sun is shining, and the sky is blue.
The clouds are puffy and are changing into butterflies and bees and bears.
The colors of the sunrise today makes everything have a pink affect, like something special is about to happen.
Oh, something special did happen.
Today, is your birthday!
Eight years ago, you came into our lives and brought so much joy!
Every thought and every memory we have of you...still brings us joy!!!!
Today, in your honor, a tea party will be held and spilled tea and sugar will be all over your house at Crown Hill.
Honey, Honey, Honey .....who made this mess? I think it was Churchill.
Then, a royal feast shall be held for our birthday girl at the Texas Roadhouse.
Psssst.....You're famous there!!! Everybody loves you!!!!!!
Do the angels sing Happy Birthday as good as us?
Is the angel food cake as good as Grammy's?
Do the angels dance with you as good as Papa?
I'll bet everything is better for birthdays in Heaven!!!!
Happy Birthday Little Girl.
Sure do miss you.
Love, Papa Bear
Happy Birthday to our Bethany!
Eight years ago today a very special baby girl came to our families. She brought joy and love at a time when we were all a little overwhelmed, a little unsure because her Mommy and Daddy weren't married nor sure if they wanted to get married. But this little girl brought a magic with her, almost like fairy dust.
I think it was Holy Spirit dust from God. She sprinkled it over her Mommy and Daddy and soon they were sure of their love for each other. Then eight months into her little life she began to have health problems and she started sprinkling her love dust on Dr.'s and nurses and people everywhere she went and touched.
She was on a mission, a mission from God.
She was a very busy little messenger, she only had four and a half short years to do her work.
But what a success she was. People were moved and changed according to His will. What a sight to behold!
This sick little child with barely any eye sight left, was able to see into hearts everywhere and share God's heart with them. Wow, what a privilege to be granted to watch.
Thank you Lord for this blessing!!!!!!!
Thank you Bethany for being you.
Happy Birthday!
Love, Grammy

Hello!!! I have had it on my heart to write and update everyone with what's happening in our lives.
1st of all let me tell you, Bethany and Gideon are going to have a new little brother July 31st!
We are all so excited!
Scott, Renee, Papa and I just got back from Give-Kids-The-World in Orlando.
Papa and I have been going out to volunteer every year since Bethany got to go out there and this year we were able to bring Scott and Renee with us. What therapy! Scott and Renee did awesome.
The manager there, Neal McCoy, has dedicated a garden in Bethany's honor! It has a plaque that says "Bethany's Garden".
Papa and I started adding pieces of outdoor furniture next to the playhouse that Bethany loved so much so last year they named it after her.
What an honor! It brought us such joy to see children using it and playing on it.

Our Gideon is such a hoot! He has more energy than anyone can keep up with, although Papa does a pretty good job of it.
He loves his Sissy and loves to look at pictures of her and talk about her.
Our Trinity turns 1 next week! Wow, where did that year go? They are back here in Colorado now. Chad is in the reserves and working at a gun shop and Dani is working at the Egg and I.
We all still have times of tears, times of heavy hearts but continue to carry on and heal.
Bethany's memory is so strong in our minds and hearts, little things will trigger it constantly. But we continue to talk about her, laugh about her, cry about her. We continue to ask God for strength and Peace. We continue to get up each morning and face the day, the day that the Lord has made.
I still feel like I'd like to write a book about our journey, I guess I've been waiting for the perfect ending, whatever that may be.
So my friends, til next time I feel the calling.
Love, Di



Honey, Honey, Honey!
You've been gone so long.....we miss you!
But, for your birthday, you get to have what we can only imagine....
You always did love an adventure!
Happy Birthday Papa's Girl!
Love, Papa Bear and Grammy!

Princess Buttercup,
Have a beautiful, wonderful day with Jesus!!!!!!!

We Love You, so much, that we are like junkies!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Love, Papa Bear and Grammy!

Here I am again. Are you surprised to hear from me? I’m thinking, searching,
wondering how I can put the last 8 months into words.
First of all let me say, Friday, Bethany’s 2nd Heaven Birthday was very sweet.
It was a small group but we had a wonderful time.

The week leading up to it is the hardest we’re finding.
So many thoughts and memories and the anguish rises back up and our hearts get very heavy again.
But then the actual day is so peaceful.
The theme this year was her barrettes.
Renee brought a basket full of them and we all wore one or more.
Yes, we all! Even her Daddy , Papa, Pepere and Gideon.
Again we had hot dogs and chocolate milk in her honor.
We signed balloons and sent them off to the sky.
Gideon was all about it. He signed a balloon for himself and for Uncle Chad and Aunt Dani because they’re in Tucson.
Chad is doing border patrol out there. Gideon also signed one for his new little niece, Trinity Jade,
Who came to us May 20th, six weeks early weighing only 4lbs 3oz. But was healthy from the get go.
So yes it was a beautiful day and we ended it back at The Texas Roadhouse.
Renee is going to cosmetology school. Scott has a new job with Capitol Lumber and loves it.
He has a twinkle in his eyes again and is quick with a smile. Something I hadn’t seen in a long time.
He and Papa have torn out our back deck and are rebuilding it from scratch. It’s been a huge project but has been great therapy for the two of them as well as some great bonding time.
Scott nicknamed Trinity “rabbit” because she was so tiny. She is already up over 12lbs now.
She is absolutely beautiful and we love her to pieces. We’ve been blessed to get to see her about once a month but we are anxious to get them back to Colorado.
Gideon is so much fun! He keeps us in stitches! He has this uncanny understanding of who his sissy was and seems to love her so much. Last month when it was thundering, Gideon was getting a little scared.
Scott told him he didn’t have to be scared, it was just his Sissy in Heaven knocking to say hi. So then every time it would thunder Gideon would yell up to the sky, “Hi Sissy” and he would knock back to her.
So here we are, surviving, healing, moving forward. The hole is still there, still very open and still very tender.
But the love we have from each other and all of you is a perfect band-aid.
Til next time,
Love, Di aka Daffy (thanks to Gideon)

Princess Buttercup, (Papa's Girl)
Happy 6th Birthday!!!!!

Enjoy your Birthday Tea Party with all of your little friends, and JESUS!
We Love You, so much!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Papa Bear and Grammy, P.S. (Gideon calls Grammy....Daffy!!!!)

MERRY CHRISTMAS!!!! or as Gideon says, Murry Missmiss!!!
Well, here I am again. Trying to sort out what I want to say. Let me start by saying, we're healing, slowly but surely, we are healing.
We've been a little taken aback, by various comments like "you're not over that yet?" or, "Gee, it's been over a year".
Not many people have been so insensitive, but a few. It really makes you have to stop and remember, they haven't lost a child, they don't understand. But for the most, people are still very sensitive, allowing us our time.
We decorated Bethany's grave again this year. It was a very sweet time. Renee made gift bags for the kids at PSL and we took them down there yesterday. So many memories there.
Scott and Renee are getting some counseling, what a blessing. I think it took this long for us all to finally deal with our emotions. It finally came to a head. I'm so glad. I knew Scott was really suffering and holding it all inside. Some circumstances happened that forced him into admitting he needed help. Praise God!
As his Mom I could see the pain in his eyes, I would ask him and he would just shrug it off. Bless Renee's heart, she's been so supportive of him. I think she too is relieved that the time is finally here for them to truly heal.
Papa and I were talking about the healing process just this morning.
I asked him if he was afraid to heal. He admitted that he was. He was afraid that healing meant forgetting. I told him it absolutely did not mean forgetting. We will never forget. I think healing means remembering with out the deep pain. A pain will always be there, but being able to remember our precious girl with joy in our hearts instead.
Then there's our Mr. Man. Talk about helping with the healing process!
He is our little Taz, our little terror, with a sparkle in his eyes and a hug and a kiss for everyone (except Santa). He is as rough and tough as Bethany was calm and delicate. He is so opposite and yet there will be a look that is so his Sissy. He looks at her pictures and says "Sissy" and gives her kisses. It's like there is a part of her in his heart too.
Now this summer we found out, we will have another little baby!
That's right, Chad and Dani are expecting! What a surprise for all of us, especially them.
So life goes on, time keeps ticking, we all keep moving on whether we want to our not. But I think we all are wanting to now.
I think we will make it.
Have a wonderful day. Give out lots of hugs and kisses.
Love, Di

Princess Buttercup,
Have a beautiful, wonderful day with Jesus!!!!!!!

We sure miss you!
Thank you for the blessing and the joy!
Papa Bear and Grammy!

Bethany had her first birthday! She is now 1 year old in Heaven!
We had a wonderful day in celebration for her. We brought many of her friends she loved to play with.
We all wore her hats. We had hot dogs and chicken nuggets, chocolate milk, brownies and candy.
We cried, we laughed, we hugged.
We wrote notes on balloons and Papa said a prayer and then we released them to her.
Then we met for dinner at the Texas Roadhouse for more laughs.
What a celebration, just like a year ago, we tried to do it the way she would want it.
Bethany taught us all about still laughing in the midst of pain.
She always had a smile for us.

I guess I will continue to write here and there.
I wasn't sure, but Mike McQueen paid for another year for us, so that answered my question.
One day maybe I'll turn it into a book. I've been encouraged by many to do so. I'm waiting for a "happy" ending I guess.
What ever that might be. O.K., maybe an "encouraging" ending is a better word.
One year, it doesn't seem possible. And to think, you all were along side of us through it all.
Wow, what blessings you are!
Love, Di

Good Morning to all,
Well, today is another tough milestone, Bethany should have been starting Kindergarten today.
I imagine us all circled around her taking pictures and oohing and aahing over her in her pretty little dress and of course with a hat on.
Next Thursday will be our one year marker.
Instead, we will gather around her grave, wearing her hats and eating some of her favorite foods and sharing wonderful memories and also talking about the way things should have been. Like starting school, what kind of big sister she would have been, etc.
What a year it has been. I am so thankful for my girlfriends at work and many of you that have allowed us to grieve, mourn and hurt as long as we need to.
We sing a song at church about winter being over and springtime is back. That's very much how it feels, like winter is beginning to pass and spring is coming into our hearts again.
Kerry and I are reading a book about grief and the author talks about how many different stages and how long it can take. He also talks about close ones allowing the grieving ones to hurt as much and as long as needed. That is so true. Because although we can laugh again, and have fun and come back into the world, our hearts still have a painful hole in them. So the best gift you can give someone who is grieving is patience and time and sensitivity.
A couple of my girlfriends took me out to dinner and encouraged me to talk about Bethany. Instead of acting like it didn't happen or that I should be over it by now, they asked me questions and let me share my true feelings. What a blessing! So often I don't want to bring up how I feel because I don't want to be a "downer" and here these precious girls allow me and encourage me to open up. That my friends, is the best gift! Remember this for someone you care about when they are going through a death or tragedy.
Scott and Renee are struggling in several ways. Not only the pain of grief, but financially. They are probably going to move out of the house they're renting into an apartment. This means leaving Bethany's room behind. I can't even imagine the pain they must be feeling about that.
We had them all caught up with Bethany's bills but between having Gideon, Renee having surgery and Scott just recently had surgery for a double hernia, they are in deep debt again. Bless their hearts, they just can't seem to get a break. I know they've been putting off moving because of Bethany's room but the time has come. Renee will start working nights and weekends for Walgreen's so hopefully that will help get their heads above water.
I know Scott in particularly, is really struggling right now in many ways. So please lift these young kids up in prayer. They need it desperately right now.
Mr. Gideon is awesome! As usual he keeps us laughing and running.
When I sat down at the computer this morning, I had no intention of writing in the journal today. I guess God had different intentions, I guess I needed to speak out.
Thank you all for listening.
Love, Di

Good morning!
I struggle with what to write anymore. How much do I share? The last thing I want is to bring you all down. But then I think it's important that people know that the process and pain continues so that maybe if there's someone else that comes across your path one day, then you can have a little insight to their hearts.
We still deal with our heavy hearts each day, but for the most part it's getting better. Still out of the blue I'll get an attack of the indescribable ache in my heart. I'll start dwelling on the negative memories, like how much did she hear after her strokes and couldn't respond? Or, how often did she need something and couldn't ask?
I wonder was she aware til the very end or at some point did she go into a peaceful oblivion?
So then I try to stop myself and start thinking on happy memories and reminding myself that now she is whole and perfect and her time here on earth was a twinkle compared to eternity in Heaven.

As the one year point comes upon us, it's still feels so fresh. We are able to all sit and talk about the Bethany that brought such joy and laughter. As we watch Gideon, we often talk about what kind of big sister she would have been. We are all in agreement that she would have been a bossy big sister, yet very motherly to him. We also know that Gideon probably would have teased and tormented her like little brothers love to do. (trust me I know)
So there's a little insight for you all of where I am right now.
Like I said, it is getting easier but I often wonder if that pain in my heart will ever heal.
I don't think so, I don't know really if I want it to.
Thank you for still being here and listening.
Love, Di

My Lovely, My Joy!
I miss thee so much Princess Buttercup, my heart aches to my very soul.
I long for the day that we can play together and go on another adventure!!!

How long O Great droL?
How I rest and trust in Thy wondrous plan, but this old wretched Bear cries out to you, for time has not healed the wound nor the emptiness I struggle with from my Princess' being gone all these days.
Please, I beg of Thee, tell my sweet Buttercup how Grammy and I love her soooooo much that we are like junkies!!!
Her faithful Bear

Coming out of the cave!!
Wow, I know it's been a long time since I've written. I tell you what, coming back to life after something like this is a slow and very fragile process. Sometimes overwhelming even. We find ourselves wanting to crawl back in where it's safe and cozy but we know we can't. I think I know how the ground hog feels.
I planted flowers again, it felt so good. Last year I didn't have the energy.
Little steps, slow, little steps make me feel like I am finally coming back.
We've even been going to church and socializing more with friends.
We went back to Orlando to Give Kids The World last month. That was amazing!
Papa will post pictures on the web site.
Speaking of the web site, I'm so sorry about the message board.
Hopefully it will be back up and running soon.
Anyway, here are pictures of a cement mosaic bench.

Papa and I bought it to go next to the playhouse which many of you will remember, was Bethany's favorite place when she was out there. They have landscaped it so beautifully and we noticed an empty spot so we asked if we could buy something to go there. Margaret was so excited and encouraged us to do so. We shopped around and found this beautiful cement bench with yellow mosaic tiles on it and we knew this was the perfect one. Then we saw two beautiful clay pots with matching flowers so we bought those too. When we brought it back, Margaret was so excited, the groundsman (Mr. Leonard) was so tickled that he went right over and planted flowers in the pots. He had tears in his eyes when we told him Bethany's story. Then an engineer came over to see it, he told us that he had wanted to put something over there but not just anything, he wanted something special. So he was so pleased because he knew that this was perfect.
We call it "Bethany's Garden".

Each year that we go out there we want to add something to it.
Also, here is a picture of Bethany's paving stone.
It is in front of the Castle of Miracles
(Look for the water bottle in the picture. That's where her stone is, and the doorway you see is to the Castle).
What a perfect place for it.

Again, we were blessed by the children and the families we met. We cried, we laughed, and yes, Papa even got to read to a sweet girl in a wheelchair who fell in love with Papa Bear.
Our soldier boy is home from Iraq safe and sound!!! He and Dani are busy making wedding plans!
Our Mr. Man is such a joy and such a bundle of energy!! I love him so deeply! He is full of kisses and hugs and then off and running. He has a way of making it all better. What a blessing.
I don't know if I'll write much anymore. I don't know what to write. I don't want to ramble so that's why I haven't written. I have found that some feel like we should be over it by now, they have no idea. We have all just begun to show physical signs from the stress of the past couple of years.
BUT, we are beginning to heal. It is still a day-by-day process.
Thank you all for your continued support and love through all of this.
Please know it's not over, please continue your prayers.
I love you all!
Love, Di aka Grammy

Good Morning,
Wow, I know it's been a very long time. I guess there's not been much to write, just trying to allow my heart to heal. It's been almost 8 months.
I'm a different person today than a year ago. Spiritually, emotionally and physically.
Spiritually: I'm still trying to figure out where I am. Let me begin by saying my faith has not wavered, I know my God is God, I know His plan is the perfect plan. I probably respect this even more now.
It's more my prayer life, I struggle in what to pray, how to pray. We haven't been going to church much, big mistake, we are still trying to crawl out of our little hole we've dug ourselves into. But there is progress, and our good friends are trying to dig us out.

Emotionally: Well, emotions are high, although I very rarely ever cry. I still haven't even cried over my Dad's death. I used to cry at sappy commercials. I still don't have any energy to cry. But when I least expect it, my heart will just crumble inside of me and a hurt comes over that is unexplainable.

Physically: Well, let me tell you, my body is going through some changes. I've gained a little weight, I've never had a weight problem (sorry, high metabolism). I don't sleep, in fact I'm going in to do a study for RLS (restless leg syndrome). Kerry and I start out in the same bed, I kick and kick and then finally go into the spare bed and have it out with the sheets til they're a tangled mess and then about 3:00 or 4:00 I go back to our bed and sleep til the alarm goes off at 5:45. I walk around work like a zombie, I have little tolerance and will let people know when they do or say something stupid. Can you believe I still have friends?
They don't know whether to cry for me or shoot me. I guess it depends on the day. I think I'm turning into Simon on American Idol, maybe he has a sleep disorder.
Scott and Renee, bless their hearts, are coming along. I think Scott is like me, just trying to work it all out.
Renee has her ups and downs but is still an amazing strong woman.
Papa, well he's still very soft in the middle.

He's been doing a lot of traveling with his job lately. That's also why the guestbook is still messed up, he hasn't had a chance to get together with the webmaster, Mike and fix it. Sorry.
Then there's Mr Man, what a blessing! He has such a sweet spirit, full of kisses and then he goes through the house like Taz! He's headstrong like his Daddy and gets a little sassy like his Mommy.
You can't help but love him to pieces!!
Our Chad should be home by the middle of May from Kuwait! YEAH!!
Dani called me yesterday, she found the perfect wedding dress. She was so excited, she was crying.
The date is Sept 10th.
So there you are, up to date. I never know how much of my heart to lay out but I'm hoping when I come out of this tunnel to one day maybe write a book or maybe speak for people that are going through this. Just something, anything, to try to help someone else. I've said it before, what a process, a long hard process.
Have a wonderful day!
Love, Di

Hello, long time, no talk to, I'm so sorry.
Well, Princess Buttercup has a new little angel to play with...Kenna Reed, she went to be with the Lord on Wednesday afternoon. Her family was hoping to bring her home from the hospital this month, I guess Kenna was an over achiever and went a little further home. She was about 8 months old and was born with a hole in a lung, she then contracted RSV while in the hospital and just couldn't recover from it.
I'm still trying to deal with all of this. What is my part? What is the plan? I fall apart with each and everyone. What good can I be? Papa and I sent a fruit arrangement to the hospital when we heard they were moving her to the Hospice floor but it doesn't feel like enough. I am sensing this is what many of you were struggling with with us. I guess because I've been through it I feel I should know the secret answers and I don't. Now I'm experiencing the "other side" with you all...How do I make it not hurt so bad? How do I make the pain in their hearts better? Wow, what you all went through with us, it makes me appreciate you even more.
Healing is a long and strange process, it entails so much more than you can ever prepare yourself for and then I think it varies on the individual situations. There's nothing like the loss of a child, for anyone involved.
Thankfully, there is a Peace of knowing that one more baby will never hurt or suffer and will live happily ever after in the Kingdom. And I can't wait til Bethany introduces me to each one of her friends. She loved to make friends.
So those are my thoughts, my heart today, like I said, healing is a long slow process and just when I think I'm better, I fall back just a little.
By the way, Scott, Renee and Gideon are doing well. Mr. Gideon is a riot! He is so ornery and so active he keeps us all running! Oh how I love that little guy!
Have a good weekend.
Love, Di

Good morning,
The service went well Saturday, we gave one last Hoorah for a man that loved Hoorah's!
It was so good to see so many of his friends from the past.
I talked a little about him and yes...I sang! I started with Tiny Bubbles and everyone joined in!
My singing debut! I'm expecting recording contracts to come my way any day here.
Kerry sang too, he sang Amazing Grace, there wasn't a dry eye in the place by the time he was done.
I think for my singing too but different reasons they tell me.
Thank you all for your calls, cards and emails! I still am in such need of your support.
I had just told a girlfriend of mine at work that I felt like the fog was finally beginning to lift, then this.
But I must say, it's very different saying good-bye to a 71 year old who lived about 140 years than a 4 year old.
As I talked about on Saturday though, our parents raised us to know that death is part of life, I'm so thankful for that.
Til next time...
Love, Di


I'm so very sad to report that my Dad, Bethany's Great Grandpa, passed away Sunday Feb. 5th at 3:30am in Tucson, AZ from leukemia.
His wife Gwen, my youngest brother Dave and I were by his side til his last breath. Dave and I have been here before with our Mom. My Dad kept up a good fight and his awesome sense of humor til the very end. By the time Dave and I got there he was in a coma but we at least made it in time. I have no regrets, I know he loved me and I know he knew I loved him.

Services will be Saturday Feb 11th at 2:00 at Newcomber Family Mortuary
901 S. Sheridan, Lakewood, CO 80215
Good-bye Daddy, I'll miss you. I'm glad I was always your favorite
little girl.
Good night.
Love, Di

PS - Also there's a problem on Bethany's guest-book, the web master and Papa
are trying to fix.
Love, Di

Hi to all!
Mr. Man is feeling better, still has a bit of a cough but definitely better. No balloon this week for the Princess, the winds have been bad again. I think we have turned into Wyoming, never have I seen the winds so bad!
My Dad is struggling with diverticulitis,(a stomach disorder), he's been pretty sick it sounds like. I haven't talked with him, I've tried, but I guess his phone is off so he can rest. We wait on info and updates from his wife Gwen. It's hard being so far away from him while he's sick and struggling.
I'm glad Gwen takes good care of him.
Papa's Birthday was Sunday, he had a hard time, missing his Princess. I bought him a birthday card with a little angel on it that looked so much like Bethany it was like she sent it to him.
Chad's doing O.K. in Iraq, although I think he's still pretty home sick (for his Mom I'm still sure of it). He hasn't made any good buddies, the others all came over together so he's feels kind of like the fifth wheel.
I might have to start calling some Mom's! (that will help I'm sure)
Well, I guess that's about it for now.
Take care and Goodnight!
Love, Di

The Balloon this week is a Lady Bug! It's flying high and strong! I love to drive by and see it! Close to her is an unmarked grave and they have Tigger up this week. I would love to meet them and say Hi. They always have new things on their little one's grave. I think it's so very sad that the grave doesn't have a head stone. I wish I were rich and could make sure every little one has a very special head stone.
Chad is feeling much better! Yeah!
Mr. Man has RSV, boo! Renee called the other night to tell us she was taking him to the ER. My how quickly the emotions surfaced. He had a fever of 103.5. Papa and I had to really talk each other through it. He's on some meds to help. Bless his little heart. Renee too has a cold, bless her little heart too.
My Dad is doing O.K., he seems to be handling the chemo well so far. He just wants to get this over with and get back out to the golf course. He said as long as he's playing from the top side he's doing O.K.!
That's about it for tonight. Have a great week!
Love, Di

Hello to all!
I'm so sorry the last update was put on late on the web site but Papa Bear was out of town.
I'm missing my Bethany tonight. One of the Dr.s at our office, his daughter had an MRI today. Her eyes have been crossing and some slurred speech. I haven't heard any thing yet but my heart is aching for them. Her name is Trinity and she's 2. Please lift them up.
Also, my Chad has been very sick in Iraq. He has Salmonella and an infection in his liver. I talked with him again yesterday morning and he has finally stopped throwing up. I think he might need his Mommy. He thinks he might need Dani. I think he must be delirious and confused. Silly boy.
Anyway, send up some prayers for him too.
O.K., one more thing, they put my Dad in the hospital for a month. I don't know if you remember but he has a rare form of Leukemia they've been battling for a while. Well, the other treatments aren't working so they are doing heavy chemo for a month in the hospital. He and his wife, Gwen, are very positive and have a great outlook. My, am I a bummer or what? So much to deal with but I'm O.K., really! Just taking it each day at a time, trusting and praying and moving on to the next day.
Good News!!
Remember Eli and his family? His Mom will be on Channel 7 news as an everyday hero. She runs a foundation for children with the same disease as Eli. It's called Eli's Angels. It will be shown:
Friday, January 20th at 10PM
Sunday, January 22nd at 7AM and 5PM
and Wednesday, January 25th at 11AM
Be sure to watch!
I'm so proud of Ann! All that she has been through and she still is able to continue to give to these little ones!
Well, it's about time for me to make dinner for the Papa Bear!
It's not good to leave a Bear hungry, trust me!

I'll keep you all posted on everything.
Have I told you lately how much I appreciate you all? I do, so very, very much!
Love, Di

I can't believe it's been over a week since I've written! My how things have changed over the course.
Papa and I haven't been able to take balloons over to Bethany because it's been so windy lately, they either blow away or deflate. I think we're supposed to have a mild weekend so maybe we can this weekend.
Chad has called a few times! Yeah! Although he said it's very hard and very scary. He sounded sad the last 2 times I've talked with him. I'm sure he's lonely and in culture shock. He'd love to hear from you. The news has taken on a different sound to us. We don't dwell on it but every time we hear of another soldier down it causes a pang in our hearts. It's also kind of funny because I want to tell everyone that my son is in Iraq! I'm so proud of him I want to tell everyone about what a wonderful man he is! I feel like I'm part of a new elite group. The Mother of a soldier. When my boys were little I had all sorts of plans for them. I knew exactly what I thought they would grow up to be. Never in all of my imaginings did I know that they would both surpass all of my great expectations! Quirks? Yes they have them. Down falls? Of course. Sides of them I would love to kick right of them? (and still can) Absolutely! But I am so very proud and so very pleased with how they have both taken on life and the obstacles and tests put before them.
All right, enough of that. I hope you all have a nice weekend!
Love, Di

Chad sent us an email this morning, whoohooo communication from the desert! Here is his mailing address:

SrA. Chad B Slaven
APO AE 09855

And, here is his email:

Make sure to check the pictures of him on Bethany's page from when he left.
Have a great weekend,

We took our Birthday gifts to PSL last night. It was strange to be there. The smells, the memories. Scott didn't come with us, he told Renee he never wants to go to PSL again. I understand.
It was good to see some of our special nurses there. Dr. Smith was there too, he was Bethany's Oncologist.
He gave us all a hug and shared some sweet memories with us. She always called him Dr Smitty and he always called her Beth. Not many called her just Beth.
I was thankful we weren't there to visit Bethany anymore. It made me so very thankful that she is not laying there suffering any longer. There's a T.V. in the lobby that shows a video of PSL and there's a shot of Bethany in it! Our little star! Even seeing that quick little video of her laying there not able to move, not able to communicate and especially not able to smile made me so very thankful that she is in such a better place!
We only had a year to watch her like that, although it felt like an eternity. Many other families have to endure so many years of that. I guess I say all of this because even though our battle is over, I want us all to remember that there are still so many out there that need our love, prayers and support.
Well, this turned out much more melancholy than I intended.
So, on to my Chad. He's doing well. He called this morning and had had his first "mission" the other day and said it went great. He can't tell us what his "missions" are, that drives me crazy! I try to guess and ask him a lot of questions, he assures me he'll tell us all about it when he gets home. Still no address for him.
You all need to check out the picture that my brother Charlie took! He named it Angel Wings
He said he thought of Bethany when he saw it.
We ordered one to go in our living room, I can't wait to get it!
Anyway, I guess that's about it for tonight. I think it's about bedtime. Oh my, it is! It's after 9:00!
Take care til next time.
Love, Di

We made it, we passed our first huge milestone!
Things didn't go as well as we'd hoped the night of her Birthday. Mr. Man was very fussy (and he never is), come to find out it was his shoes. He has very pudgy feet and his little boots were hurting them. As a result Mommy got upset, Daddy got upset, Daddy took Mr. Man home and soon we all just dispersed.
Oh well, that's how it is sometimes.
Papa and I took some great balloons over to her on Friday.

Our Chad is in Iraq. He called us for one last time for a while early this morning, about 3:00am our time. He was leaving Kuwait to go into Iraq. United Airlines had lost some of his luggage so he got to stay in Germany a couple of extra days. He sounded very tired this morning and he admitted he was nervous but also had met some nice guys. Iraq is 10 hours ahead of us. As soon as I have an address for him I'll post it so anyone who wants to can send him a care package. He would love it.
Mr. Man is here with us today, he had a sleep over with us last night. I tell you, what a cutie. He has such an ornery sparkle in his eyes and a great belly laugh. He is such a blessing! He is starting to really try to talk.
Unfortunately he can say "Papa" (gag),
so Papa makes sure he asks him who his favorite is and he says "Papa" (more gagging).
Check out the photos page for the pictures of Bethany's Birthday party at the Texas Roadhouse, and our Chad the day he left for Iraq at Bethany's grave and the airport.
That's about it for now all.
Happy New Year! Here's hoping for a better 2006!
Love, Di


Happy 5th Birthday

Papa Bear and Grammy

My son left to go to war yesterday...My son left to go to war. It doesn't matter how many times I say it, it doesn't seem real. Dani and I dropped him off at DIA. Dani lost it about Pena Blvd, I made it til we were unloading him and one person came up and hugged Dani and thanked Chad while her little boy stood and stared at him like he was 10ft tall (well, he almost is) and then another yelled out of her car "thank you Soldier". Soldier, my son is a Soldier. I haven't had a close family member serve in the Military before, let alone a war, this is all very new to me. I couldn't be more proud. He was excited and yet nervous when he left yesterday. Bless his little soldier heart. Tomorrow is the Princess' 5th Birthday. So much for a mother/grandmother's heart to handle right now. But I'm O.K.. I have a peace (for now). I'll keep you all posted on the Birthday party and on my Soldier boy too if you'd like. Have a nice day! Love, Di P.S. Thanks to Mike for keeping me posted!

Good Morning, We made it! Not without tears but we made it. We had Scott, Renee, Gideon, Chad and Dani over for an early Christmas on Christmas Eve. Eve.. The theme was definitely centered around Bethany. Several gifts were reminders of her. The rest of the weekend was spent with other family members and a couple more memory gifts. Papa and I took a couple of balloons to her grave on Christmas day. A large stocking with Elmo in it and a star with an Angel on it. Papa's not at work this week so next week I'll have him post some pictures. I'm not sure if Mike, the webmaster is in town, if he is, hopefully he can post this update for everyone on the web page. My little computer is so inept. Tomorrow my Chaddy leaves, more heart ache but I couldn't be more proud of him, serving our Country.
Til next time. Love, Di

Here we go! Into the Holiday's, ready or not! The gifts are ready, the decorations are ready, the food is bought, but my heart, my little squishy heart, I'm not so sure it's ready.
We had dinner with some very close friends of ours, Cris and Joelle, last night. We laughed, we cried. How fresh is the pain, how easily it sneaks up on you and you can be over taken with it. I think the numbness is wearing off and the new reality of it all is seeping up to the surface. Wow, what a process. I don't remember it being quite so complex with my Mom's death, of course, I don't remember a lot of things anymore (LOL).
What a process.
Donations are coming in for Bethany's Birthday celebration, Thank you!
It sure gives us something to look forward to.
So anyway, here we go, into the wild blue land of firsts. Ready or not.
Love, Di

PS. Eli's things have not been returned, bless Ann and Chad's hearts. They are hurting so bad right now.

I wrote about little Eli passing a few weeks ago, well, more terrible news, Chad and Ann's house was robbed the other night! They took all types of memorabilia of him. You can see the channel 4 News Story:
We're praying these thieves will see the news story and return the memorabilia, they can keep the cameras.
I don't know what more to say, in the midst of so many good people reaching out something like this happens.
Bless their hearts.
Love, Di

Hello one and all,
Renee called me this morning with a wonderful idea! She and Scott talked about it last night and they were trying to decide how to celebrate Bethany's birthday on the 30th of December this year. Here is what they came up with, from Renee words:
Well, here we are, Christmas is almost upon us and Bethany's Birthday is fast approaching. I have been doing a lot of thinking and I have finally come up with a way to celebrate Bethany's Birthday while also bringing cheer to children who may have to spend Christmas or their Birthday in the hospital. If you would like to bring a little bit of happiness to these children, you can donate to Bethany's foundation (or send a gift to one of us) and we will use the money to buy games, toys, books and movies and take them to Presbyterian St. Luke's Pediatrics ward or CHOA (Childhood Hematology Oncology Association) and donate them in Bethany's name. I know that Bethany loved having the toys, games books and movies to play with while she was there and as you know these items easily wear out when they get that much love from that many children. If you can donate please email any of us to let us know that this money is for PSL or CHOA, and we will get the toys games books and movies there no later than Jan. 2nd 2006.
Thanks for participating!
Love, Renee
What a great idea!!!! Bless their hearts! It brought tears to my eyes when Renee called me with this today. We are going to meet for dinner at Texas Roadhouse the night of her Birthday. Michael Murphy, the owner there has been so wonderful to Bethany and us that we thought that would be a great place to celebrate her day. We called him to let him know and he was so excited and is going to get his staff involved too. They have a wall dedicated to Bethany in their waiting area.
Bethany was always so concerned when she heard other little ones crying, that's why this is so appropriate to be able to try to make things a little easier for the little sick children. I can't think of a better way to celebrate our little Princess! I think this will probably be a tradition each year! I'm excited to see what comes of this!
Papa and I already know what we are going to buy...Tea sets for tea parties! Bethany loved to have tea parties,
(especially with Papa)
and when she was at the hospital playing in the play rooms, before her strokes, she would have tea parties with paper cups. There are 2 play rooms that she played in at PSL, one in the oncology area and one in the regular ped's area.
This so much fun!
Have a wonderful night all!
Love, Di

Hi Everyone!
We put up a tree and decorated it yesterday at Bethany's grave. We had a sweet time. Scott came, I was so happy he did. Auntie Buk Buk and Michele came too, I was so glad they came! Papa has put the pictures up. Be sure to check her photo page. We did O.K.. It's funny, when you expect to be upset you do O.K. and then when you least expect it, the emotions flood in, go figure.

Anyway, enjoy the pictures. I'll have Papa put Mr. Man's Birthday party on too.
Have a good week.
Love, Di

Good Friday Morning,
O.K., in all honesty, it's been a hard week. I had told you Papa and I both had the blues over the weekend, well it carried over into the week.
I woke up Tues. morning dreaming about Bethany dying. Although it was different from the actual time. She couldn't talk but was trying to tell me that she loved me. I shared it with my girlfriends at lunch, they allowed me to cry and then I took a nap.
Thurs., a little 4 1/2yr old came into our office that reminded me so much of Bethany. She has CP and some brain issues. It was hard for her to walk and she can't talk. I walked her to the back and she squealed with excitement and we laughed together. When it was time for her to leave she cried because she wanted to stay and play. I hugged her and then turned and walked away and sobbed. We were done with patients for the morning so I just sat at my desk alone, needing privacy, and just sobbed. I again, shared it with my girlfriends and then went and took a nap.
This Sunday we're all going to put a Christmas tree up at Bethany's grave. Scott is coming too. He stopped by last night to borrow some tools and I had to just hug him tightly.
He's a good boy to let me, maybe he needed it too.
O.K., now I have to try to pull myself together to go to work. The good thing is, Friday's are just til 1:00. I think I feel a nap coming on!
Don't worry, I'll be O.K.. Just needed to share, it feels so good to share.
Love, Boo Hoo face Di

Good Sunday morning!
Gideon is ONE today! Unbelievable! His parents are having a party for him at Chuck-E-Cheese this afternoon.
We made it to Eli's viewing the other night. It was so very hard but I'm so glad we went. We were able to meet his Mommy and Daddy and Grandma's. I knew the feeling while watching them, that "out of body experience". You go through the motions but feel like it isn't really happening. I hope Papa and I can bring them some comfort in the following weeks.
We are going to have a Christmas tree decorating party next Sunday at Bethany's grave. It will look so very pretty when we're done.
Dr. Courtney College bought us the coolest lights for her grave! They are solar stars, we'll put one on each side of her headstone. So if you drive by at night, just look for the two glowing stars! What a precious gift. Thanks Courtney.
Papa had the blues yesterday, I'm getting them today. We bought a new frame for some Bethany pictures and while I was going through pictures to pick out which ones I wanted I became emotional. So many pictures, so many wonderful memories.
I miss her so!!!
A girlfriend of mine that lives in Phoenix (Tammy) had gold bracelets made for Renee and I. It's the letters "BETHANY" with a heart. It is so beautiful! I love wearing it everyday. I don't care if I'm wearing silver or gold, I have it on. Tammy you have been so wonderful during all of this!
Thank you!!
Well, Papa is making french toast for breakfast so I better get out there.
I think I smell onion, that's scary!
Have a good week everyone!
Love, Di

Hi everyone, I am sad to report that Bethany has a new friend to play with. Eli has gone to be with the Lord and with Bethany. He went home Friday morning at 4:30am. I'm sure Princess Buttercup welcomed him into the kingdom with opened arms! You can read more about him and his services on his web page:
Please lift his family up in prayers.
We didn't get to meet him personally. We were hoping to this coming weekend.
Papa and I cried for his family today but rejoiced for Eli.
Well, we made it through our first big holiday. All went pretty well. I told Scott, Renee and Papa that this year it was almost easier for me than last year because Bethany is no longer in pain. They agreed and Scott said that it was so hard last year because we all tried to act like everything was O.K., for each others sake, while Bethany laid there in her her chair not being able to really participate.
So there is a peace, a true precious warm peace, knowing that she is whole again and able to run and play and see with Eli and all her little friends.
One holiday down, many to go.
Remember Eli's family in the following weeks too.
Love, Di

HAPPY THANKSGIVING!!!! What am I thankful for? I'm thankful that our Princess Buttercup is having the best thanksgiving ever! I'm thankful that she's not in any pain and that she is playing with many other little ones. Every time we go to her grave we are reminded of how many friends she has in heaven. Today Papa and I are going to take a turkey balloon over to her. Then we're going to Papa's brother, Timmy's house for dinner. Scott, Renee and Gideon will be there too. Chad is working a new shift 5pm to 6am so he won't be able to make it. I was surprised that Scott wanted to come and very pleased. Here we go, into the holidays! I'm O.K. today so far, Papa seems O.K. too but of course it's only 8:20am. Renee bought a Christmas tree for Bethany's grave, I'm looking for solar lights to put on it. My friend Dena found some but they're $89.00 for 1 string and then I'm worried they'll get stolen. Too sad that we even have to worry about that. I hope you all have a wonderful day with friends and family! Give your babies a hug and if there's a lot of giggling and chaos, enjoy every second of it! Love, Di

Good Friday Morning (just kidding) it's really Thursday, but it's a Friday to Papa and I because we're going out of town tomorrow to visit my Grandma in Omaha. She is my Mom's Mom and has always been so precious to me. We try to get out there a couple of times a year. She has a little Alzheimer's so it can be wearing but I treasure every minute of it. Kerry is our chauffeur and drives us all around and listens to us talk about the same things over and over. Bless his patient heart!
Anyway, all is O.K. here. Papa and I added a few more pretties to Bethany's grave, so did Aunt Dani. I'm amazed how much I enjoy going there and being able to decorate it. It's very comforting to me. This week's balloon feature is a Pooh Bear, next week we'll get a turkey on there for Thanksgiving.
The days are getting a little easier although I am fearing the holidays and her Birthday.
One step at a time, one step at a time.
Til next week my loved ones.
Love, Di

Hi guys, Yes Papa let me out of the closet, but he hasn't taken me shopping yet. I will hold him to that! I don't mind being in the closet too much, I get to talk to Alfred and Jeremy (Bethany's imaginary friends that she kept in the closet). Papa and I had a long talk the other day, we decided that we needed to get back to some kind of ministry work but we also decided that it would be better to wait until after the holidays, Bethany's Birthday and our youngest son, Chad, leaves for Iraq Dec. 28th, it was moved up from Jan. 25th. We have not had the energy to do anything, we have to really talk ourselves into socializing at all. Well, God being God on God's timing has decided differently for us (of course, that's how He is). He decided to bring some families into our lives that may need us now. You just met one of them, Lily and Sarah. We tried to tell God "um, no thank you Sir, we're not ready yet,but feel free to check back with us in Jan." but He didn't really care what we thought (Father knows best). I cried all morning at work before meeting Lily and Sarah, I told the girls I work with that I was afraid to love another child that I could lose. One of my friends explained to me, that maybe I wasn't suppose to be there for the children, maybe it's for the families. Although, I think Lily has come to help Papa and I. Lily is our "Lily in our valley". She is so precious! I held her and kissed her and she brought comfort to my heart. Holding her made me miss Bethany so. Through Sarah we have met Eli. He reminds us so much of Bethany. Eli is 2 and wasn't expected to even make it til 2 but as we know from our girl, children too have a mind of their own. We haven't had the privilege of meeting him in person yet but we're hoping soon. And then there's Natalie She reminds us of our Bethany before her strokes. The reason I'm sharing all of this with you is because it's obvious there are so many sick babies, so many hurting families. Papa and I know that we can't heal the children but we can try to help heal the the families hurting hearts. So ready or not, we're willing, not able, we know that will come from God but we will try to pick up the pieces of our hearts and reach out to these other families. We feel we have a choice to sit and wallow in our pain or get up and learn from our experiences and reach out to others. Wallowing seems easier sometimes. So please pray for our new adventure, for strength for us because we have little right now. But please especially lift up these new families in our lives and the many we don't even know about. My mom had always said that she didn't watch the Jerry Lewis telethon because it was depressing. I grew up with that same mentality. Now I realize, it was basically just ignoring the pain around us "out of sight out of mind". Well, now that the reality is in my face I can no longer ignore it. Til next time. Love, Di

Well hellooooooooo there!
This is Papa Bear.
Yep. I stuffed Grammy in the closet again, but it's ok, I told her that there was a new outfit in there for her. She loves outfits! So I guess I'll have to take her shopping when I'm done.
'Cause she's not going to be happy with me.........
Yesterday, we met a very special little girl, Lily, and her Mommy (Sarah). Our lives have changed with everything we experienced with Princess Buttercup. And now, we know that we have to take what we've learned and share with other families. What an honor and privilege! What a blessing!
We felt compelled to give Lily, Bethany's Prayer Bear.
Things like that make an old Bear cry like a little girl.
Here she is, with Prayer Bear!

Here's Lily's website:
Well, better let Grammy out. Shhhhhhhhh! Nobody tell her that I was here, ok? Love ya
Papa Bear

Hi Everyone!
Papa put pictures on Bethany's photo page and on her journal and scroll down a little on the journal page to see the Halloween pictures. He's also going to post some more today or tomorrow.
We had Mr. Gideon over for a sleep over again last Sat.. Then we took him to Bethany's grave and said something about "Sissy" and he began looking around for her.

It must be so confusing for him. He is such a good, happy, active little guy! What a precious blessing he is.
God knew just what we needed. He keeps Papa and I on our toes! After he leaves we are wiped out! But so is he.
Scott and Renee seemed in really good spirits when they came over for dinner Sun. night. Gideon is so crazy about his Daddy! Scott walks in and everyone else is 2nd class. They have a very precious relationship, you can see it in both of their eyes. Scott likes to play rough and Gideon loves it and screams for more. Grammy has to look the other way sometimes.
So, enjoy the pictures. Please continue to pray, it's still a moment by moment deal, but it's getting better.
Thanks everyone!
Love, Di

Here are pictures of Princess Buttercup's headstone.

Check out her photos page as well.
Love, Di

Good Morning!
I'm so sorry I haven't written! Papa's been on vacation and hasn't been at work to do my updates. (must be nice!) Bethany's headstone is up! It came out very nice. It's nice to have it.
We are all still going through our ups and downs and trying to maintain.
Scott, Renee, Gideon, Chad and Dani were all over last night for Halloween. They were all dressed up and took Gideon out trick or treating. Kerry and I don't really do the Halloween thing but it was so cute to see them all dressed up!

I'll have Papa put the pictures on soon. Our neighbors enjoyed seeing them, I think they were happy to see Scott and Renee out and having fun. Of course I know they were just using Mr. Gideon to get candy since he can't even eat it yet. Gideon came back holding tightly to a snickers bar in his little cold hand not even knowing what was inside of that package. He is such a cutie! What a blessing!
Papa and I are planning another trip to Orlando this May to volunteer at Give-Kids-the-World again. I can't wait! It's so nice to have something to look forward to. This is a trip that although we give our time, we are the ones truly blessed by it.
Well, I must get to work now, til next time.
Love, Di

Hello everyone!
Long time, no talk to. I'm sorry, but I feel like there's just not much to talk about anymore without sounding redundant. The statue is gone, someone must have stolen it, unbelievable! It makes me so very sad that someone would do such a thing. I keep driving by hoping that it would re-appear. Oh well, it's just a "thing" but still it's sad.
Papa, Scott and Chad are going hunting this weekend, I think it will be so good for the 3 of them to get away for some "guy" time.
Papa and I went to Breckenridge last weekend for our 28th anniversary, we had a wonderful time. The weather so was so beautiful! You just can't beat crisp, Colorado fall mornings. The mountains take on a pink hue and look so awesome! We walked through the shops and saw so many things that would have been fun to buy for Bethany. Our hearts are still so very tender, and ache so easily for her.
I realized yesterday, that I'm starting to put behind her pain of the last year and starting to really miss the girl she was even more. It's a strange feeling. I have to keep reminding myself how much happier she is now. A grammy's heart can get kind of selfish and want her girl back.
Oh, oh, oh, I almost forgot to tell you, there has been a star named after Bethany by the Starlight Foundation! I guess after a child passes they name a star after them. Also there has been a tree planted for Bethany by some people that work with Memere at Homestead park by Pat and Dave. Just some more sweet reminders for our Princess.
Well, I guess I had more to say than I thought (imagine that).
Take care my wonderful supporters!
Love, Di

Good Thursday morning to you,
I guess all is about the same, we're all coming along slowly but surely, moment by moment but the good moments are getting more frequent than the bad.
We put a very cool Disney princess castle balloon on Bethany's grave Sunday and at first the snow was holding it down but now it's flying high again. We also put a very cute little statue on her sight that Chad's best friend Ryan gave us because he saw it at a garage sale and it reminded him of Bethany. It's a little girl feeding the ducks. Well when Renee was there yesterday, it was there and then when Dani went last night the statue was gone! We even had the balloon tied to her wrist but now the balloon is tied to something else.
Chad and Dani went to the office to check and they said it's possible that the maintenance people picked it up during their clean up day or someone stole it. I guess low lifes take these types of things and then sell them at the flea market! Kerry and I were so very upset! I know it's just a "thing" but it was so special because it was such a symbol of Bethany. Papa and I would take her to the park over here all the time and she would feed the ducks. They would come right up to her and take the bread right out of her hand. One time, one bit her, she was so surprised! So after that she would always say on the way, "one might nibble on my finger, but it won't hurt". I hope it shows back up. I guess there's a shed where they will store things so Dani's going to go check today and see if it's there. I thought it was so sweet that Ryan stopped and went out of his way to buy it for us. Ryan was also very close to Bethany, she called him Uncle Ryan, he also would go to the park with us.
Well anyway, I'll let you know what we find out on the missing statue, it's funny how little things can mean so much.
Take Care til next time! I love you!
Love, Di

Good Morning,
I am feeling much better this morning, thank you all for your precious emails and prayers.
This dealing with death is such a funny thing, it hits when you least expect it.
I hope you all have a wonderful weekend. Papa and I will take a new balloon over to Bethany on Sunday. We're supposed to get some nasty weather by next Monday, hopefully her balloon can withstand it. Although it would be just like Bethany to do an ornery little giggle and just let go.
Thanks again for everything!
Love, Di

Well hello there!
We're back, we got back in today (Wed) at about 1:00.
We had a nice time but it's good to be home. I've always had a hard time coming home from vacations (like my mother) but this time was easier. I don't know how to explain it but I just feel so different, things just don't feel the same to me. I feel like I have changed so much in this last year, almost like I'm a different person. My birthday came and went and I didn't care, usually I make a big deal of it and I looked forward to coming home from a vacation, I don't know, I just feel different. Every little girl I see makes me think of Bethany and miss her. We met a lady that worked there at the Jersey airport and got to talking her, she lost a 6 year old daughter about 13 years ago. I asked her if the pain ever goes away and she said "never" that there will always be a pain in your heart. I know it will get easier one day, and I get frustrated because I can't stand it when I can't control my emotions. I do remember feeling this way with my mom too. I guess I was doing so well that this kind of took me by surprise.
But then Renee stopped by with Mr. Man (Gideon), and his bright blue eyes and his precious smile helped warm my heart back up.
There is just such a hole in my heart, like something has been ripped out and an empty space is there. Also, my heart aches for my Scott, I don't get to see or talk to him much, I don't know how he is really doing.
Oh Lord, this Grammy's heart is sure hurting tonight, please fill me.
In Jesus' Name.
I'm sorry, but thank you for letting me pour out my heart.
Love, Di

Good Monday morning,
I can't believe it's been a week since I've written, it goes to show how different things are now. I think we're all doing O.K., each of us dealing with all of this our own ways. My Scott is still pretty quiet and trying to work things out in his mind , his way. It's hard as a mom to watch him hurt and not be able to fix it. Papa and I have been taking a new balloon each Sunday, while we're there we're getting to know some of the other little names around Bethany. I always like to straighten things up on the other graves while I'm there too. A little one named "Bubba" had his 2nd birthday on Friday, he had a birthday balloon, I cried for his family. Mr. Gideon is getting bigger and still the happiest little guy you could meet, he continues to bring such joy to our hurting hearts.
Papa and I are going away for a little while, he has a business trip in New Jersey this week, I'm meeting him out there at the end of the week and we're going to tour NY, and DC and a few other states around there that we haven't seen before. It will be nice to get away for a little while. We'll be back next Wed. so you won't hear from me for a while.
Please continue to lift us all up, we still need it. Thank you for still surrounding us with your love.
Love, Di

It's Monday evening and I'm waiting for Papa to come home from work and I have a bit of the blues. I emailed a friend, Shawn, and told him I miss Bethany, the way she used to be, I don't miss her laying in bed day after day with no life but I miss the little girl of before. I think it's because a little girl of about 2 came into our office today that has hydrocephalus and she reminded me so much of Bethany. Her name is Hannah and she has a beautiful sparkling personality. She has some difficulties walking and such because of the hydrocephalus but it didn't stop her. These sweet babies don't know any different, they just take what they're given and make the best of it. My, what we can learn from them. O.K., here come the tears, my heart sure misses my Bethany. What a girl, what a precious little girl.
Love, Di

Good Morning,
Wow, 2 weeks have gone by already since Bethany went home. So far we're all doing pretty well.
Papa and I were talking and thought about how things would have been so different if Bethany had died suddenly a year ago. It would have been devastating, easier on her but devastating to us! We would not have had the celebration that we had because we would have been in shock and in such despair. This year has prepared us, and molded us for Aug. 31st. God gave us time to be able to really let her go and to do it with such a peace. He worked in each one of our hearts individually for that day, and reached out to all of you and prepared all of your hearts to hear His word. Even though the pain over the year was so immense and also the pain that we will always have, it is so awesome to be blessed with hind sight to see God at work. So many of you have asked why, many have been angry, and now, many of you have said to me that now you see, now you understand. That is what it was all about! That's why Bethany had to endure what she had to endure, so that ALL of us could see more of God that we would have never seen otherwise. Wow, how awesome is that?
Again, we are ALL involved in this together for a reason, no accidents.
Thank you ALL for traveling this journey with us and please continue by our sides.
Love, Di

Good Morning,
Our weekend went well. Some blues here and there but for the most part a wonderful peace that she's not hurting. Papa and I kept Gideon for a sleep over Sat. night so the kids could go out and I guess they had a great time, as did we. Papa and I visited her grave yesterday, that's something I've never done before, it was kind of healing I guess. Her balloon we had on there blew away so we put the balloon there that the firefighters gave her.
I need to get working now, so bye til next time.
Love, Di

As I was writing back to one of Bethany's nurses this morning, Joel, I realized that none of you came along into Bethany's life by accident. God brought everyone He wanted, to her. Even as I read Tyler's entry and he only knew her for a half hour while he took her to hospice and she touched him so, that was not an accident.
Those of you that have written in saying you stumbled across this site by accident, no it wasn't.
God wanted to reach each and everyone of you. He wanted you to meet an extraordinary little girl with an extraordinary love for people so that you could see Him through her.
Wow, God really loves you, He really wants you to listen, He really wants you to follow the tuggings at your heart. How precious is that!
Love, Di

We made it through the day after! We will take each day at a time. Most of us went back to work, Pat spent the day with Renee which was good that she didn't have to be alone. I can't speak for the others but it felt so good to be back at work. It will be good for us to try to return to some normalcy.
I know it will be hardest on Renee and Scott, their marriage has revolved around this sick little girl. I hope as things quiet down and they don't have us all coming and going through their house they can really concentrate on each other and Gideon and just try to be a normal family.
I truly felt like I lost Bethany a year ago and this last year of watching her suffer and endure has been horrific. I have such a peace now that I know she's not in pain anymore. Even Papa was saying he feels his heart is a little lighter (of course that could be because there's a large hole in it).
So we will slowly pick up the pieces of our lives, slowly try to re-enter back into the world around us. We will face many hard days ahead but then we will just remember where she is, and rejoice for her.
I will continue to write my feelings down, this is my therapy after all. I can't just go cold turkey.
Love, Di

What a celebration! Thank you to all that helped us celebrate and to all that prayed us through it! Is it possible to say you enjoyed a funeral? I guess it is when you see lives changed before your eyes and people come to know the Lord as Savior! Our Pastor Rick, did such an awesome job sharing about Bethany and Her God. Our friend Joe and Kerry did and incredible job with putting together the slides with the music. And then Scott and Renee got up and did a beautiful song together. Yes, many tears, but still mostly a beautiful celebration of a life that truly touched the world and brought Christ to the hearts of so many. Praise God! Love, Di


She looks so beautiful!!!! As we all walked in together and saw her for the first time we all broke down and sobbed. Then as we gazed down into her beautiful little face she actually looked like our Bethany from before she was so very sick. We all thought there were times where we saw her breath or blink. There was even one time as the noise was getting louder I thought "oh shhh don't wake Bethany". Advantage Mortuary did such a wonderful job in every way. Her room was filled with the aroma of flowers, they had sweet music playing like lullabies. The experience was as good as it could be considering the circumstance. We went out to dinner afterwards, and the strangest thing was that, we laughed like we haven't laughed in a very long time. We went to the Texas Roadhouse, who has been a big supporter of Bethany and the manager bought our dinner. I'm sure as he heard us laughing he had to wonder if we were all a little demented. Well, it's time for me to start getting ready for her celebration service. I'll see some of you there and the others I will feel in my heart. Love, Di

09-04-05 (#2)

Hi, I had an idea, after reading Aunt Dani's update on the guestbook. It would be wonderful if some of you would write some memories that you have of Bethany on the guestbook and then we could have our pastor read them at her service. Plus, I have to admit, I love hearing the stories. Love, Di


It's Sunday morning, Papa took Scott and Uncle Chad up hunting for a little while this morning to just get away and have some "guy" time, they're looking forward to Gideon to be old enough to go with them. I'm reading my emails and being touched and lifted up by each one of them. So many from other families with sick little ones. Such an instant bond we feel with each other. Scott and Renee are hanging in there as well as can be expected. They of course have their ups and downs. Seeing the obituary in the paper yesterday was hard. I think we may go fishing next Saturday and Scott said he asked Renee to ask Memere to watch Bethany and Gideon and then he just stopped and changed it to Gideon. Tears came to his eyes as he told us this. Bless their hearts, this is not how is was supposed to be, this is not how we imagined things 4 1/2 years ago. Papa and I had Gideon for the day yesterday, that precious boy can sure bring joy to our broken hearts, let alone keep us so busy it keeps our mind off of things. What perfect timing for him to come into our lives. Thank you Lord. Bye for now. All of my love, Di

09-03-05 (#2)

I'm sorry, for those that missed it on the Aug 31st update, her service will be Tuesday Sept. 6th. Love, Di


Hi, it's Saturday morning, the obituary is in the papers. It makes it all the more real. One thing I did forget to mention is you can place donations in lieu of flowers in Bethany's name to Give-Kids-The-World or to the make-a-wish foundation. Both of these are incredible organizations that reached out to Bethany and to so many families with sick children. We're still just going through the motions, doing what has to be done but getting through it O.K.. All of your guestbook entries and personal emails are so precious! I can not tell you how it warms our hearts to read all of these from all over the world! Kerry and I sit here together each morning and read them and cry and smile. Thank you so very very much!!!!! Love, Di


Good Morning to all, I woke up with a peace this morning along with my sadness. Just knowing that our baby girl is not suffering anymore. My heart misses her so much but I'm so thankful she's finally whole and happy. As Papa and I snuggled this morning we talked about how we missed her smiles and laughs but still, we're so happy for her. I know there will be many emotions to come and they can switch in a heart beat, but right now I'm at peace. We had a long day yesterday making all the necessary plans but the mortuary, Advantage, and the cemetery, Crown Hill, were so very good to all of us. They saved us probably over $3000.00 on costs. It will be a beautiful service and the Princess will look exquisite. The service will be at Grace Church 6969 Sheridan Blvd Arvada. CO 80002 720-895-9000 at 11:00am. Then a procession (with an Arvada Firetruck) to Crown Hill and then we will go back to Grace Church for a Fellowship in honor of her life. There will be food and beverages there. There will also be a viewing the evening before at Advantage Mortuary from 4-8:00pm. 6425 W Alameda Lakewood, CO 80226 303-233-3333 By the way, the attire for the service is bright happy, celebrating colors! The Obituary will be in the Saturday papers. I know all of you can't be there with us, but I know you are in your hearts. Love, Di

It's about 4:30am, I woke up about an hour and a half ago. (I guess my ambien from yesterday morning finally wore off.) I've been sitting here reading all of my messages and also Bethany's on the guest book. Of course the tears are running as is the nose. So many lives this little girl has touched so deeply, near and far. Whether you knew her well or met her for a moment or just grew to love her on line. We kept Gideon for a couple of hours last evening so the kids could just zone out. He's so active, it took Papa and I, Chad and Dani to keep up with him. He napped through the hardest part yesterday, when they came to take Bethany to the mortuary. His innocent little eyes didn't watch as his daddy picked up his sister one last time, while he cried and sobbed as he held and hugged her and then had to lay her on the gurney. He didn't see or here us all sob as they wheeled her down the hall and into the elevator. No, our little man woke up, as on cue, right after and stood up in his play pen and smiled with a twinkle in his ornery yet beautiful eyes as to say, "it's O.K., I'll take care of you all, I promised my Sissy I would". You wait for this day, you even pray for this day and still, the pain hurts much deeper than you ever thought possible. I knew it would, I knew it would from experience with my mom, but still there is no possible way to prepare your heart for the deep, deep, immense pain. And yet the joy, knowing she no longer has pain, the sweet, precious joy and peace of knowing she is finally, truly, O.K. and I will see her again one day. Praise God! Love, Di

08-31-05 #2
She did it! Sweet Bethany went home to be with the Lord today, Wed. Aug 31st at 11:25am.
Goodbye sweet Baby Girl, I love you and miss you so much!
Services will be Tues.. I'll let you know more info as we get it.
Love, Di

Princess Buttercup,
You fought the good fight, the battle is done.
Fare Thee Well My Princess!!!!!

I will love you forever, see thee again soon I pray!
Your faithful Bear

Good mid-morning to you all. There is a somewhat funny reason that it is mid-morning. Not that I've been under any stress lately but this morning I was taking my morning vitamins and such and I accidentally took my ambien sleeping pill. By the time I got out of the shower I was so dizzy and my legs felt like rubber, it was about then that I realized my mistake. So needless to say, there was no way I could drive because now I'm seeing double vision, so I called my work and crawled back into bed for a couple of hours. I still feel kind of woozy but I think I'll be O.K.. Now I have to go get the razzing at work.
Bethany is peaceful and feeling comfortable at her new place.
Love, Di

The Princess was transported to the hospice center last night. It was a pretty somber night. After everyone else left, Papa and I sat by her bed and held her little hands and the tears rolled down Papa's face.
I hope these nurses come to love her as they get to know her better. It's hard leaving her with complete strangers. The good thing is, that this center is connected to PSL, so her friends can walk over to see her. So all of you over there please go over and say hi, also, check on her when we're not there, make sure your Princess is being well taken care of.
Renee bought posters to decorate the walls, she also brought several things from home for her room too. It'll take a lot to brighten up this room but trust me, we will.
My head, my tummy and especially my heart hurts today.
God help us all!
Love, Di

Good Monday Morning,
The weekend went well actually. She still seems pretty comfortable and not in a coma yet. Scott and Renee even took her and Gideon to the zoo yesterday. Bless their hearts, trying so hard to just be a normal family on a Sunday afternoon.
The plan is still to transport her to the hospice center today. So many mixed feelings for all of us. We all just want what's best for Bethany.
A new need for the kids, a car. Something that gets really good gas mileage for Renee to go back and forth to the hospice center. Something very inexpensive but reliable. They have an Explorer that Scott drives and then the big handicap van that gets very po ileage. So if you have something you're looking to sell or know someone, please contact me ASAP.
Otherwise, I guess that's it for now.
Lift us up for strength today. Thanks.
Love, Di

So far Bethany is staying pretty comfortable with the morphine. The kids are thinking about admitting her on Monday. Thank you all for your encouraging emails and support! God fills me through all of you each day.
Love, Di

The kids checked out another hospice center yesterday, Hospice of Metro Denver, it's down by PSL. They felt much better about it. We can come and go 24/7. She'd have her own private room with a sleeper so someone could stay the night if they wanted to. The staff was very friendly and comforting to Scott and Renee. They also provide meals for the family. I had such an excellent experience with hospice when my mom was there. This is the same company just a different location. I know they relieve a lot of stress and pressure from the family and allow us to just be family. But of course there's still the guilt of putting her in there. It's not that the kids are giving up on her, or don't want or can't take care of her but this way Bethany will have around the clock care and the pain meds can be given at the doses she needs when she needs them because these people are trained to watch closely and keep the patients very comfortable.
Oh these poor young parents and the decisions and choices they've had to make over the past years for this baby. Bless their hearts. I know that even though they're surrounded by so many they feel all alone, and so confused and so very torn.
So far Bethany's still been fairly comfortable with the meds she's getting. I didn't see her yesterday but Papa felt like she's beginning to slip away. I haven't talked with Renee yet this morning, I'll keep you all posted.
Love, Di

There are choices and decisions to be made that aren't easy. Scott and Renee are checking out hospice centers. Bethany is going to need around the clock meds for pain so we've encouraged them to check their options. Bless their hearts. Kerry and I were there last night when they came back from one. They were so torn. This is not where babies are supposed to die, they're supposed to die at home.
Please lift them up in prayer about this. Which ever decision they make, please support them.
I can't begin to put in words the feelings in our hearts right now. We're all edgy, we're all hurting so deeply.
And then there's Mr. Gideon, he had us all laughing and entertained during the surgery yesterday. He talked and flirted with all who walked by. What a blessing he is. I held him up to Bethany before she went into surgery and he gave her a big slobbery kiss the way babies do, with an open mouth and lots of drool.
Well it's time for me to go to my support group now (work).
Love, Di

A sad situation. The surgery was fine. Her shunt was working but it was coming out of her head so they had to remove it. Now her head will fill with fluid, probably quite rapidly, and the pressure will be intense so we'll have to keep her very medicated and she will go into a coma probably by this weekend. Or the fluid may try to escape out of the new incision which will cause a whole new problem. The Dr. didn't really expand on what he'll do if that happens.
This is so unbelievable. When we think we're at our lowest low, we go lower.
Even for a "cup half full" girl I'm falling.
Love, Di

08-22-05 #2
Last Surgery!!!!!????????
One more time. They are going to remove her shunt Tues. morning. It has come completely opened up now. Yes, her head will fill with fluid, we'll have to keep her even more medicated now. It will hopefully speed up the inevitable. I can't believe it, I can't. How much does this little girl have to endure??? They're doing it as out patient surgery. It's scheduled at 8:15am, she has to be there at 6:15.
Oh please Lord, take her while she's under, please Heavenly Father. Take this little girl home into your arms now, please. In Jesus' name, Amen
I'll keep you posted.
Love, Di

Another quiet weekend. All is about the same.
Renee, Pat, Pepere and Papa took the kids to the Carnation festival on Friday. They had a nice time.
The Texas Roadhouse Restaurant has Bethany's picture up in their waiting area, they were there and were so happy to meet Bethany in person. They took some pictures of her with the owner and the staff. Kerry said they were such a nice group of people, he really enjoyed talking with them. So if any of you go to the Texas Roadhouse on Wadsworth and 56th, check out the pictures on the wall in the waiting area.
Well, I guess that's about it for now.
Love, Di

Wow, there goes another week!
All is the same with the Princess. Her shunt is still exposed on the back of her head. Anyone else would get an infection that could take their life, not our girl. I don't get it. I don't even know what else to write right now. Our lives are still not the same, nor will they be while she's laying in her bed. We still don't make big plans to do things. Some tell us we have to move on, but again, while she's still laying there, we can't nor do we want to. We're all in this with her for the duration. One day things will go back to some normality, although I know that there will always be a hole in my heart. That piece will go to heaven with Bethany and live with her there in eternity.
It's all yours little Princess, it's all yours.
Have a good weekend.
Love, Di

Hi everyone,
Sorry Friday's update didn't get on the web page til yesterday, technical malfunction I guess.
Another weekend came and went, no major changes.
Many of you have asked how Scott and Renee are doing, they definitely have their struggles, but I'm proud to see them pull through them. We all need to surround and support them and encourage them and pray for them. They're so young and have been through so much. Marriage is so hard under the best circumstances let alone what they're having to endure.
I've often told Scott, he comes from a long line of married young, long, happy marriages.
I updated Bethany's get to know me page, just scroll to the bottom. Papa put a new picture down there too.
Til next time.
Love, Di

Good Friday Morning to you all,
Still hanging in limbo here. I am so tired still, again, the not sleeping well. I'm sure it has to do with not doing anything either. I don't have the energy or desire to do anything.
If anything happens over the weekend my brother will post it on his website: charlieosphotography Otherwise I will talk to you on Monday.
Have a nice weekend.
Love, Di

All is pretty much quiet here on the home front. Bethany's about the same. Gideon's trying to walk already. He pulls himself up. When he crawls he straightens out his legs as if he would just love to stand right up and walk/run. He keeps us all laughing, he's such a happy little guy. What a blessing.
Love, Di

Hi there, Bethany's digestive system is now slowing down, she actually threw up on Friday when Papa was there. Not a good thing with a trache. Renee called the hospice nurse and they said now we need to do a draw and see how much is in her tummy before we give her, her feeds. She's still having a lot of seizures so we have to keep her pretty medicated most of the time. Her shunt is very exposed on the back of her head now.
Kerry and I went to the Adams County Fair on Saturday to watch my nieces auction off their pig and goat.
We had a really nice time with my family. My little great-nephew, Nathan, was there, it was so fun to watch him ride the rides, all the while, mine and Papa's hearts were aching for our Princess, wishing she could be there enjoying "kid" stuff too. It's so nice to get out and have a good time but it's like we almost feel guilty because Bethany's back in the house just laying in her bed.
I can't wait for her to go home and run and play.
One day soon baby girl, one day soon!
Til next time.
Love, Di

Good Morning to all,
Nothing has changed this week, that's why I haven't written much. I think we're all trying to prepare ourselves mentally that this may go on for a long time now. We've heard many different opinions about how long the brain stem can actually keep the heart going, everything from days to months. Bethany still cries when she's uncomfortable. When we talk to her she looks startled. I think it's her reflexes causing that. The Dr.'s said that that's one of the things that's left with the brain stem. It gets confusing. Why is she still here? What is God's plan? Where do we go from here? What Lord are you trying to teach each one of us? And of course, how much longer?
Our lives are still in limbo. We don't make plans or go far from home. We still jump when the phone rings later at night or early in the morning. What a journey...what a journey.
Love, Di

Hello to everyone,
All is about the same, although her incision is opening up even more on her shunt.
Looks like this may be a long time yet. I would have never imagined.
Thank you for staying with us. Please keep it up.
Love, Di

Good Saturday Morning,
Yesterday was a hard day for all of us, marking one year since this all began. Renee was up most of the night before crying. The girls from my work bought her and I a massage a couple of weeks ago so I encouraged Renee to go have it done yesterday. She did, and said it was wonderful.
When we brought the Princess home last month we had no idea she would still be hanging on so long.
This "limbo" is so hard. We all feel mentally prepared, we've said our goodbyes, and here she still is. Her little body breaking down ever so slowly along with our hearts.
I talked with Renee last week and I told her, it's easy to be faithful when things are easy, most can be faithful when things get a little tough but God wants our faithfulness and trust through the whole duration, the whole stretch. It doesn't take the pain away, it doesn't help the aching heart, but we know, because He's shown us, that He is in control. And the time here on earth is just a blink compared to the time in eternity, and soon, Bethany will be whole again and will see and run and laugh with no more pain.
He has a reason, He has a plan.
I don't know if this comforted her or not, it seemed to. I think it was more of a reminder to myself than anything. I don't understand but I trust. My heart hurts deeply for Bethany and also Scott and Renee, for all of us. I want to make everyone O.K., I want to help them all with their pain, but I can't make it all O.K.
So I trust and I wait and I wait and I wait..........
Oh Heavenly Father, wrap your arms around us, hold us close, let us feel your love. Take our little Princess to your kingdom.
In Jesus' name.
Love, Di

One year!!!!
One year ago today was the last day we heard our little girl's sweet voice.
Papa and I had taken her to a play at the Arvada Center to see "Monster Under The Bed".
We had such an awesome time!

When we came back to our house, there was a present for her on our front porch from Shawn in Dallas.
A "Woody" doll that she named..."Shawn". He also made a hat for her. That's the hat she's wearing in the picture holding "Shawn". You can see dark circles under her eyes, almost like she didn't feel well. We had no idea. I'm so thankful we spent every moment with her to the fullest!
No regrets.
It's a hard day for us today. Please hold us up.
The Neurosurgeon told Renee we have 2 choices...leave the wound alone, just keep it clean, or remove the shunt. Well, that seems wrong because then her head would fill with fluid and cause her pressure and pain.
So we are going to keep it clean.
That's it for now.
Love, Di

Hi guys! The pictures are up from the poker run on Sunday!
Go tocharlieosphotography and click on Bethany's day. They are excellent! Check them out and you can order the ones you want. Charlie's donating all the profits to the Bethany fund. What a nice brother.
All is about the same with Bethany. Renee's doing a great job keeping her incision clean. We should hear from the Neurosurgeon today.
I gotta get to work. Have a good day.
Love, Di

Well, our little girl has a new concern. Her skin is opening up on her shunt (on the back of her head) and is oozing. The hospice nurses are helping Renee keep it clean. Bethany's Neurosurgeon is out of town 'til Wed. We're not sure what he's going to want to do. Bethany's Pediatrician thinks he'll want to revise the shunt. Of course none of us want her to have to go through that.
Baby, baby, sweet baby girl, I'm so sorry, so very sorry. I wish I could make this all go away for you.
I'll keep you posted.
Love, Di

What a day, what an amazing, incredible, day! About $4000.00 was raised today from the poker run!
John and Linda Harkness, you two are so precious! Thank you for all of your hard work for putting this on.
Pam Osse and Shannon Miller, what blessings you are. You all 4 worked so hard in the hot sun and look what you pulled off! All of the volunteers at all of the stations, thank you for giving up your Sunday! All of the owners at the different stops, thank you for sharing your businesses. Thanks to Red Hill Motorcycle Werx for letting us start there and to the Outlaw Saloon for letting us end there. Thanks to the band, Bitter Creek, you guys were excellent. To all the waitresses at the Outlaw, thank you. To all of you that were behind the scenes and I don't know your names, thank you. To my Charlie, for giving your time and talents and taking all of the photo's, and for not being too bad of a back seat driver (the lights were just dark orange).
Little Miss Emerson, thank you from my heart for the hug, you have no idea how much it meant to me.
My Chadman, thanks for spending the day with your big brother, helping to take care of the kids. I hope I haven't missed anyone, I have such a fear that I did and if I did, please forgive me. I'm sure I'll think of it in the middle of the night tonight.
It was so fun to meet so many of you that I've only emailed.
People are still so amazing, their hearts, their kindness. Things like this prove it. Don't let the few bad apples fool you, there are still a lot of good people out there.
Enjoy the pictures on charlieosphotography
and order the ones you like.
I wish this could heal my Princess, I know that she feels your love. I know I do to.
Love, Di

The wheelchair is here, the wheelchair is here! Finally! I'm going to over in just a little while to get pictures of it, I guess she's in it right now. I told Renee, some want to go in a pink Cadillac, Bethany wants a pink wheelchair.

She had another very severe seizure last night, or I guess early this morning at about 3am. Renee said it was the worst one yet. Also she had a fever of 104. Poor little baby, sweet baby. She's much more comfortable today.
I'm looking so forward to the poker run tomorrow, it sounds like it's going to be huge, it should be so fun.
It's nice to have something to look forward to, it's been a while.
I wish everyone's kindness and compassion could heal our Princess. Although it does warm our hearts.
Bethany would love this! She loves people and enjoyed the BBQ benefit so much last summer. Renee thought about bringing her but for obvious reasons she's not.
Well, I'm going to go see the Princess, the most wonderful Princess of all!
Love, Di

Bethany had a really severe and long seizure yesterday, she was better after Papa and Renee gave her her drugs. It makes us think...this is it, and then it's not. It seems like we're all settling down a little now. Scott's back at work, as is Papa and Memere. Although Papa can't make it through a whole day, he always tells me, he has an appointment with a Princess.
I hope to see a lot of you at the poker run, it sounds like a lot of fun. Papa and I are going to drive it. Renee's going to try to come, Scott's going to stay home with the kids.
Again, if you don't get my direct emails, you can get your updates through www.charlieosphotography for the weekend. I'm sure he'll have the pictures up from the poker run soon after.
Love you all!
Love, Di

Good Morning,
It's Thursday morning and still nothing new to report. Her stats continue to drop and alarm us and then they go back up again. I guess she likes to get us all in the same room together, she must get lonely.
This Sunday is the poker run in Lyons. It should be a lot of fun. It will end with a live band and prizes.
Let's make it a celebration of Bethany's life!

Please click on the flier!
You can also contact Red Hill Motorcycle Werx (303) 823-6363 for more details.

Here are the directions:
·Registration and 1st Card DrawRed Hill Motorcycle Werx - Lyons
·Red Hill to Left Hand Canyon Stay on Hwy 36 (toward Boulder) 6.4 mi. right turn on Left Hand Canyon
·Take Left Hand Canyon 19 mi. to Hwy 72 – right turn to Ward
·Millsite Inn – 2nd Card Draw
·Stay on Hwy 72 - 9 mi. to Hwy 7 – Turn left
·Take Hwy 7 - 10 mi. to Estes Park
·Follow signs in Estes Park to Hwy 34 (Big Thompson Canyon) 14 mi. to River Forks Inn – 3rd Card Draw
·From River Forks Inn continue on Hwy 34 - 9.3 mi. to 29th - turn right
·Take 29th 2 mi. to 18E and then veer left to 31 – 3.4 mi to Windjammer Road House- 4th Card Draw
·Continue on 31 to 8E - 3.3 mi – turn right onto 23
·After small jog - .6 mi. on 23, turn right onto 85
·Take 85 – 5.5 mi.
·Turn right on Woodland Road then left on 75th to Hwy 66 – 2.9 mi.
·Turn right on Hwy 66 back to Lyons – Outlaw Saloon (on right) – 5th Card Draw

My brother Charlie Ogard from
will be there shooting for it. He wants everyone to know that all profits will go to the Bethany fund. So put on your best biker clothes and get some great pictures.
You don't have to have a motorcycle to play, I'm thinking Moped for myself.
We had dinner and played some cards at our best friends home last night. It was so nice to be pampered and laugh and then be able to open up our hearts and cry and to be comforted.
Thank you Joe, Karen, Mish and Jake.
Well, have a nice day, til next time.
Love, Di

It's Tuesday morning and all is about the same. Bethany's body temp. went down to 93.6 over the weekend. We are all still walking around in a daze, going through the daily routines, trying to act somewhat normal (that's a little harder for some us than others, Papa!). I feel so physically sleepy. I find myself always thinking, if I could just lay down a minute, take a little nap, just get some more sleep. I actually have been sleeping better a night but I still feel so tired.
I received this story today and I wanted to share it with you all, it really touched my heart:

I had a heart to send this to you. May your family and each of you be blessed and filled with the Great Comforter, the Holy Spirit, and feel the presence of Jesus Christ's love, grace, mercy and peace this day and every day, I pray.
This is a daily devotional that I got today:
"I Want to End My Life", by Chuck Betters
I really fight the standard clichés we often use as Christians such as "trust God" or "have faith" or even "God is good all the time." When we lost our 16-year old son Mark (our youngest child) in a car accident in 1993 even the Scriptures and the hymns seemed to mock us. And yet, within clichés is often God's truth. One day our congregation sang, "I surrender all, all to thee my blessed Savior, I surrender all." I missed Mark so much and resented that he was gone. My heart cried out, "Do I really surrender all? I want my son back. Is that surrender?" Years later, here I am, struggling to walk by faith trusting God by grace even though we have had to endure incredible pain, not only from the death of our son but cancer and numerous other forms of brokenness common to mankind. So, I understand the struggle of living by faith every day - but listen.
God is sovereign and you can trust Him.
He has entrusted this suffering to you. There are many nonbelievers who also suffer from heart disease as you do. But God has filtered this trial into your life so that you might show the world the difference between how the Christian and the non-Christian responds to these trials.
A few years ago, a dear friend of mine in his 30s learned he had a Stage Four brain cancer. He had but a few months to live. One day he invited me to his house for lunch. He was nearly blind and growing more and more weary. As he sat across the table from me he said, "Chuck, I want to walk my girls (both preteens) down the aisle but I know I will not be able to do that. I need to ask you two questions."
I assured him I would do my best to answer them. He looked me square in the eye through his sunglasses and with a sobering voice said, "Chuck, is God really Sovereign?" Not really stunned by this I responded, "Yes, you know He is." Then he raised an even more critical question. He said, "If God is sovereign, can I trust Him?" He nailed the essence of true faith. God is sovereign and you can trust Him. The real question is, "Will you?" Listen carefully to the words of a fellow struggler. You cannot outgive God. No matter what you have to bear in this life, as you do so to glorify God He will owe you nothing because He is debtor to no man.
So when you grow weary and think of ending it all, beat on His chest. He can take it. He invites your questions. Tell Him you are claiming 1 Corinthians 10:13 and that He promised He will not give you more than you can bear. But keep in mind as you read that verse what God really promised was the grace to endure the trial. He never promised to take it away. Your trial, though it is for a season, cannot outweigh what God has reserved for you in glory. Until that day you must remain faithful in your pain. In fact, it is in the middle of our weariness and broken dreams and our pain we learn to trust. That is why I often say, "Pain is actually your friend since it teaches how to love and trust your God."
So rather than end your life, surrender it to the Master, Who will surround you with His love and grace to endure.
In Him,
Ken Albertson

It's Sunday morning, all is about the same. She looks like she's already gone but her little heart continues to beat slowly and when we think she's taken her last breath another breath appears. She actually looks very beautiful. Her long lashes curl up to her lids and her little lips so kiss-able.

As her Nama wrote in the guest-book, she may have lost the physical battle but she has won many hearts and souls for Jesus.
Sunday's were Papa's and my day to have her over, to go to the mall or the park or just play in her room or all of the above. Even after a year it's hard to adjust to not doing that. Now our days are filled around, what if, is it time, or for Papa, just sitting by her bed holding her little hand. Then about the time our hearts feel so low we can't move, Mr. Gideon comes bouncing into the room with a smile and a squeal and reminds us to smile and to let us know, everything thing will be all-right. Thanks Mr. Gideon!
Well, as ususal, I will keep you posted.
Love, Di

Good Morning,
Not much to report this morning. We had another "rehearsal" yesterday afternoon. This is so incredible. I think she likes getting us all together. Her little heart slows down into the 40's and 50's her breathing gets so slow we have to watch to see if she takes another breath and then all of the sudden she will. Her little lips turn blue, she gets an ashen color and we're sure this is it, and then, in a little while, her color comes back and her stats go back up.
Love, Di

My, my, oh my, what a night.
First of all Bethany's still with us, bless her heart.
Last night I came home from work and I was on line reading an email from a very dear friend of mine from out of state and she was sharing her heart with me, as the mom of two boys, that she felt I should really pray about my decision about not being there with Bethany and Scott at the end. I promised her I would pray about it and explained that I was really at peace about it. When I got off the phone, I called Papa to get an update and He said that they thought it was just seconds away. I said I'll be right there, hung up the phone threw a pair of flip flops on and went immediately to their house. When I got there everyone was taking turns holding her, music was playing and the tears were flowing. I walked around the room and hugged and kissed everyone, held my Chad while he sobbed, hugged my Scott while he cried and hurt and kissed my Bethany which I thought would be my last kiss. The hospice nurse came and stayed for a while and then explained that this may or may not be it
Her stats were so low, her little face was blue but the slow heart beat that she had was still a pretty strong one. I told Scott, this was dress rehearsal. He said he's so tired of crying, I hugged him and said I know.
Soon laughter was able to start filtering the room, I went and picked up some KFC and some sat on the front porch and played with Gideon while others sat by Bethany's bed side.

"I don't think we can take much more Captain!" and the Captain said "My grace is sufficient you, for my strength is made perfect in weakness" IICorinthians 12:9
Aye-Aye Captain.
And the prayers continue...........
Love, Di

What a day yesterday. We thought the time was finally here. The anguish of, this is it, and then it's not.,
She's still holding on.
I didn't go over there, I don't want to watch her die. I watched my mom and I said I never wanted to see that again. If Bethany were coherent, or alone, that would be different, but I know she knows my love for her. She has many people surrounding her. I can't do it, I just can't. I don't want that memory pierced in my head forever. I called and talked with Scott and I explained my feelings to him, I also told him that if he wanted me there, I would be there in a heart beat, by his side. He totally understood and promised me it was O.K.. Scott has always been very honest with me and I know he is now too. I stayed at work just minutes away, surrounded by my girlfriends that held me and hugged me and cried with me. Then I got the phone call from Papa, that her heart rate is back up, her oxygen level is back up and she's breathing better.
(I had a hair appointment last night, I told everyone that even Bethany knows not to mess with Grammy's hair appointments.)
Papa however, wants to be there holding her hand...........whispering in her ear
Papa and I came home and sat and stared off into space like a couple of zombies all night. Well, til about 8 when we couldn't keep our eyes open anymore and went to bed.
How many more days like this? How much longer? Even death has it's timing, it's process.
All in God's timing.
Keep praying and holding us up.
Love, Di

Good Morning,
Sunday night our door bell rings and 3 of the neighbor girls hand Papa a plastic cup full of money.
They had a lemonade stand and donated all the money they made to Bethany. God Bless the precious little children, they warm my heart so.
Bethany's diaper was dry all day yesterday even from the night before, so we think her kidney's are slowing down now too. Renee called me and told me this yesterday and then we were both just quiet and Renee said, what am I supposed to say after saying something like that? Yippie? I said I know, it's so hard to know what to say or to think. It is the strangest feeling, to know that her body is shutting down, to think another step closer to losing her but another step closer to her being out of pain forever. Wow, what a journey, what a most bizarre journey.
Keep holding us up! Thank you!
Love, Di

It's Sunday morning, a little after eight. I haven't talked with Renee yet to see how Bethany's night was. Yesterday she was bleeding in her mouth and her stool was black and tar like. Renee talked with the hospice nurse and they think she might be bleeding internally now. We don't know from what, but I guess another sign of the end.
Scott's birthday is today, he's 25. As he was growing up, I always told him God has a very special plan for him...I had know idea. I thought a minister or youth leader...I had know idea it was going to be like this. I couldn't be more proud of him. He's grown to be more of a man than he could have been being in the ministry. Plus who knows, maybe this is preparing him for some type of ministry.
Oh yea, I guess this is his ministry. Not what I imagined, but it couldn't be any greater.
Still we watch...we wonder...why so slow...why so agonizing? Why this sweet little girl and not one of us? And God fills my heart with...just trust...just watch...and know that I am God. And I do...I trust with an aching heart...I watch with tearful eyes...and I see that He is God. And I cry out..........
Lord have mercy on our Bethany.
Love, Di

Hi guys,
Renee and Pat took Bethany to the mall today. I guess they had a nice time. Scott wasn't really for it but I think it was more for Renee than Bethany. She needs some normality and Bethany used to love to go shopping. She looks rough, I stopped by tonight and her little eyes are really red and she's running a high fever. It kills me to see her like this. I just hope she's not in pain and not able to tell us.
My friends son, Cole and his brother Devin and sister Megan, raised $415.00 with the fund raiser!
Drum roll please..............and the winner is, Keri Camp! Yeah!!!!!!!!!!!!!
Wow! The sweet hearts of children! Thank you Cole!!! Thanks Megan and Devin for helping him out! We are blessed to have you 3 awesome people in our lives!
Mr. Gideon is still the party animal! He was in his play pen and on his hands and knees and rocking it to move it across the hardwood floor. What a tank. When I was holding him, he would just look at his sister as if to wonder why she doesn't talk to him. As he grows, I'm looking forward to telling him what a wonderful sissy she was and how she would call him "Tiny" while he was still in his Mommy's tummy and she would talk to her tummy and say, "What the heck are you doing in there?"
Oh Bethany, sweet Bethany, how excited you were to be a big sister.
I can't imagine this going on much longer, she looks so tired, but I guess only God knows. I just hope it's soon, I don't think we can stand much more. But regardless, we will still be by her side. Papa will still read and sing to her and I will still kiss, kiss, kiss her.
We love you Princess Buttercup!

(p.s. since Papa can't get to a computer on weekends, I encourage you to watch on my brother Charlie's site for any updates. Charlie graciously also posts all of my updates!).
Or, check out his beautiful photography at:
I taught him everything thing he knows (NOT).
Love, Di

Good Morning,
I don't have any new news at this time. I just wanted to let you all know that. She is breathing very shallow, her heart rate will drop to 50 and then jump up over 200. She's also getting some splotches on her skin, Renee will ask the hospice nurses about those today.
I will let you know when I find out.
I feel better today, I slept last night for the first time in a while. It's amazing what a little sleep can do. I haven't talked with Renee yet this morning, I hope she slept bless her heart.
Scott and Renee are wearing down but holding on too. Please continue to lift them up in prayer.
Thank you all so much!
Love, Di

I write to you all with a very weary heart. I am so tired, I am down right exhausted in a way I've never experienced before.
When my mom died over 8 years ago, my Dad and I sat by her bedside for 3 weeks, day and night, in hospice care. That was tiring, but nothing to the extent that I have experienced in this last year, let alone these past weeks. In my exhaustion, my faith has not wavered. I know my Lord loves me, I know He loves Bethany even more than I do. Do I understand why things are this way? No, I don't. Do I trust that what ever happens is O.K. because I trust God? 100 percent!! Do I have any answers? Not many. Do I have a thousand questions? Absolutely! I also know my questions may never be answered here on earth. I do know, that because I believe that Jesus died for me over 2000 years ago that I too will be in heaven with Bethany for eternity! That's all there is to it. No religion, no good deeds, nothing, except believing that God sent His only Son to die on a cross for my sins. That's it, it's that simple. That's where I get my strength to take another step, to get up in the morning when my body aches and my heart feels like it's been torn out of my chest. That's why I write! So I can share with all of you my most heart felt feelings! My deepest hurts and my highest highs!
Because I know that Bethany's life and mine are just a ####### here on earth compared to what eternity is.
Well, there you have it! My sermon on the net.
Love, Di

Hello all,
There is a person from Papa's work, John Harkness, who is putting together a fund raiser.
This is going to be a motorcycle run (cars are also welcome) starting in Lyons, July 24th, and doing a 100 mile loop back to Lyons. This is a poker run, where participants pay $15.00 and then have stops along the way to pick up cards to create a poker hand. There are already prizes that have been donated, and a band that will play for the party at the end of the run.
So, if you ride a motorcycle or know of anyone who does......please spread the word.
This looks like it will be lots of fun!
Please click on the flier!
You can also contact Red Hill Motorcycle Werx (303) 823-6363 for more details.

Good Saturday Morning to all, (Sorry that this wasn't posted until Tuesday, if Papa can't get to a computer, nothing can get posted).
All is about the same. So many different emotions. Now the hospice nurses are saying that her bowels are working again so we can up her feeds again. One minute we're prepared for her to go, the next, we're trying to adjust to the thought that this may still go on for a long time. Unbelievable! We can't even prepare ourselves mentally, once we think we are prepared the tables turn. My my oh my.
Last night Kerry and Pat went to record a song for Pat. It came out beautiful! I sat and listened to it and the tears flowed again. (I'm still waiting to be asked to record, maybe itszy bitszy spider)

Every morning we wake up and the first thought that comes to our head is, no phone call. What are we supposed to feel? And again we wonder, how much longer does she have to be like this? What God, are we to learn? Then we pull ourselves together, get up, and go through our routines, all the while I pray for strength to face another day for Bethany, Scott and Renee, Memere and Pepere and Papa and I. And God answers, and we all make it through, and we all manage to smile, to laugh and of course cry.
It will be 1 year, July 29th, since the morning that this all began. This last year has been a fog. Was there a winter? Did Christmas happen? I think there may have been even a Presidential election. It's all very vague in my mind.
Well, I know in my heart, that what ever is next, that my God will supply me with the strength that I need to endure, to continue on. I'm tired, so tired, and I hurt, my whole entire body hurts inside and out.
But I know I will make it, I don't feel like it, but I will.
I won't give up Bethany! I won't give up Lord!!!!! I won't!!!!!!!!!
Love, Di

Our Chadman got home last night around midnight. Thank you Lord that he's home safe and sound.
I hope all of you take the time to read the beautiful entries into Bethany's guestbook. They are so moving and so touching, be sure to have tissue's in hand.
No new news at the moment.
Love, Di

Well, the hospice nurses were over yesterday and they said her bowels are slowing down so they cut her feeds way down.
Michele, our RT friend was over this morning and said her breathing is changing too.
Chad will be home tonight.
I'm scared. My heart is pounding and I feel scared. This is what we've been praying for, waiting for, now it's close and I'm so scared.
I'm at work, surrounded by my girlfriends, 2 minutes away from the kid's house. Scott's home, Papa's on his way over soon. More just waiting... Agonizing. I feel queezy.
I don't know what else to say....
Love, Di

Hi to everyone,
Bethany's heart rate is low as is her blood pressure and her body temp. The hospice nurses came by again yesterday and said her lungs sound a little fuller. I think the process has begun. Scott came home from work yesterday, he's so scared she'll go while he's at work. He stayed home today. I'm not sure that his boss will pay him but I told him to not give it a second thought, the bills will be taken care of.
Dr. Meyer's staff (Bethany's pediatrician) came over to see her yesterday, what a sweet bunch of ladies.
Hospice is coming back today, they are so very sweet. They will be there to stand beside the kids and hold them and support them.
Chad leaves California this evening, he should be home tomorrow.

It's all O.K. now Bethany, it's all O.K.

Love, Di

Good Monday Morning,
Our little Princess is still hanging in there. The Hospice nurse said it sounds like her lungs have fluid in them. Also what comes out of her trach is thick and greenish (sorry, gross). We don't know if this means maybe she does have pneumonia now or not. Her little heart rate will jump up sky high sometimes too. She's pretty much out of it, if she's awake she gets uncomfortable and Renee gives her meds to help.

Papa and I went over for a little while yesterday so the kids could go out. Papa washed her hair and I brushed her teeth. Papa still holds her little hand and reads to her, I kiss kiss kiss her. We put lip gloss on her lips so they don't get so dry and when we came home I could still smell and taste it. Mango, was yesterdays flavor.

Renee recorded a song for the service last Friday night, what a beautiful voice she has (thanks to Dan Medoff of Seventh Star Productions for donating the recording studio time!). Papa has a song that will be played and Memere may record a song too. I haven't been asked to record or sing yet, I'm not sure why. (all of you who know me, HUSH)
Anyway, it's a strange limbo we're in, we're all trying so hard to stay strong, albeit we're getting tired. But we will continue to trust our Lord and wait on Him.
Have a good Monday.
Love, Di

Good Morning,
Well, the weekend is upon us, what will it bring?

Last night we went with Scott and Renee to pick out a head stone. They picked out a beautiful one.
I didn't know there were so many to choose from. Different colors, different styles, different sizes.... All quite expensive. Which brings me to this... they need help financially again. There's some money left in the Bethany fund and while Advantage Mortuary is donating their services, which we found out from the kids checking out another place, is saving them about $3000.00, there are still so many more expenses. Like the coffin (I hate to even write that word), the plot, which Crown Hill is only charging a minimal amount, the head stone, newspaper article, and several other expenses.
A gal that I work with, her son is doing a fund raiser for Scott and Renee and he is raffling off a $100.00 gift certificate to the Flatirons mall. If you'd like to get in on that, you can call Jenny or Cole at: 303-410-0409.
What a sweet 13 year old boy to want to do this.

Anyway, our Princess is still hanging on. The kids re-instated hospice care. I'm glad they did because I know they can be a lot of help, at the end especially.

Take Care all, til next time.
Love, Di

Good Morning,
All is quiet. My heart goes out to Scott and Renee, they have so many decisions to make. We were over last night and Scott seemed very distant. I can't imagine how he must feel about burying his daughter.
It's hard enough to bury my granddaughter. It's all very surreal, we talk about choices of coffins and music and etc. and the look in their eyes is painful. And then pretty soon we'll all break out into laughter over something. (Usually Gideon)
Renee and I had a nice talk, she said she feels guilty about sometimes wishing Bethany would go. I told her she is being so unselfish by wishing this. That she is being mature beyond her years to want what's best for Bethany. Bless her heart. I told her that she and Scott need to plan all of this the way that they want it, what will be best for them because this is permanent and this is what they will have to share with all 6 of Bethany's siblings (She wasn't in agreement with the 6 siblings).
So please continue to lift these two young parents up in prayer for strength and peace. The scary thing is, is that this may still go on for a while. Oh, I hope not. We are all getting weary, we are all feeling tired.

Bethany, sweet Bethany, it's O.k. now, go be with Jesus and live happily in eternity.

Good Day.
Love, Di

Hi my sweet precious everyone,
There are new pictures on Bethany's photo page. The 2nd one is of her Daddy and Auntie Buk Buk (Patty). Can you see the concern in their eyes?
Oh this girl and what she has done to so many hearts.
P.S. The 8th photo is of the bulletin board at the hospital that Renee decorated. It's a picture of Bethany but Renee had to draw on her legs.
Very cute.

There was a beautiful sunset last night,(Sunday), Renee told me this morning that Scott thought maybe God would take Bethany up in those bright pink clouds.
Wouldn't that be nice, for the Princess to go through the beautiful pink clouds?

Renee feels that it will be this week, I hope so, I hope the mother's tuition is right. It's time, it's time for our sweet, sweet girl to go be with Jesus.
Papa has a vision of one day when he goes to heaven, Bethany will run up to him and say, "Papa, I can see you!, Let's have a tea party!"
What a day that will be!

Lord hear our prayers, hear our cries, have mercy on this girl. Bless her Lord for all that she has endured, Bless her Lord for all that she has accomplished in her short dynamic years. Oh Please my Saviour, I give you the girl I love most, I give her to you God.
Thank you Lord, thank you. Amen

06-18-05 #2
What an unbelievable day! Is it possible to find joy in the midst of tragedy? It is if you know Christ. Trust me on this because we all experienced it today. We girls went shopping this morning for a dress for Bethany's going home to Jesus.
The guys all hung out at the hospital with Bethany. Then we all went to the park after Bethany was discharged and what a wonderful afternoon we had. She was so comfortable and peaceful most of the time. We laughed and goofed around and some friends at our church brought us dinner to the park and we laughed some more.
Our future daughter-in-law, Dani, was there too, the only one we were missing was our Chad. But we called him and took pictures for him.

We finally took Bethany home and got her comfy and then we went out on the front porch and held hands and gave thanks to our Lord that Bethany was home.
Now of course, the tears began to flow and we held each other and hugged.
My what a day, what a wonderful day.
We all are at peace with what is to come. Don't get me wrong, there's plenty of sorrow that goes around but we know it's time for our Princess to enter the Kingdom of Heaven. Her castle is ready, now our prayer is that it comes quickly and peacefully for her.
Please hold us close right now, tight as you can, we need you still.
Love, Di

Good Morning,
Well, the kids want to take her home this afternoon. She doesn't have her wheelchair yet but they really want her home. So Renee, Pat and I are going to go out this morning and buy a beautiful dress for her and then we'll meet the guys at the hospital and bring her home.
I also have another correction, please forgive me, I was misinformed, she is actually breathing on her own mostly. The machine is just helping.
I've had some good talks with Scott about what to expect and how hard this is going to be to watch when she does go. I watched my mom and I was happy to be there with her but the sight has never left my mind. So pray for these young parents for strength and courage like they've never experienced before. I still watch the two of them in awe, they are such troopers, they amaze me.
Bye for now.
Love, Di

Hi there,
We've had a peaceful day today. They're keeping Bethany very sedated because when she's not, she's very uncomfortable. We're not sure that she'll even make it to her house because now the machine is doing most of the breathing for her.
Papa and I met with Advantage Mortuary this morning, they've offered to donate their services for the kids. How very generous. We've talked about some things we'd like to do for the service. I can't believe I am planning my granddaughter's funeral. I just can't believe it.
We are all doing O.K. for the most part, tears still come unexpectedly from any one of us, but that's O.K., laughter still fills the room now and then too.
Little Gideon rolls around the room in his walker, running into our toes and laughing as to say "it's O.K., Sissy's going to be so much better soon".
We still need you all, we still feel your love, thank you.
Love, Di

Hi....big breath....O.K. here I go,
Bethany does not have pneumonia, her lungs are shutting down.
Dr. Bernard talked with Scott and Renee alone this morning. I don't know what all was said but I guess he put it on the line for them. Bethany has had enough. She has fought the fight and it's time to let her go. Scott and Renee are going to take her home and let her go home to be with Jesus.
There's a sweet peace in Bethany's room right now, sure there are tears and sobs, but a very sweet peace that comes only from knowing that there is a better place for her and knowing that God is God and knowing that there is a heaven.
We talked about great memories with her, we talked about the little nasally voice she had and how she would put herself in time out. She made it very hard to discipline her when she did it to herself. We talked about how she would shriek when we chased her. Scott and Renee talked about the bedtime routine and how she would try to hide from Mommy by holding on to Daddy and wrapping her arms around his neck and hiding her face in his neck. Sweet sweet memories forever.
Renee would like to wait to bring her home until her new wheelchair gets here that was made special for Bethany, it should be here in the next couple of days.
Nurses have hugged and cried with us, Doctors too, security guards and housekeeping also. This little one has touched every one that's met her.
So this is bitter sweet, many emotions, many feelings, most of which have not sunk in yet.
I will continue to keep you all posted of course with the following day's happenings.
Love, Di

Good Morning,
Well first of all I need to make a correction, Bethany's not on a ventilator, it's actually called a CPAP, (controlled positive air pressure). It's not breathing for her, it's just forcing air into her lungs, because of the pneumonia her lungs were collapsing.
There's something else I didn't share with you yesterday, I guess I didn't want to put it in words because it makes it all the more real... Bethany's brain is almost completely destroyed from the strokes. The part that does the thinking is gone. What's left is the part that does the breathing, reflexes and sadly, the feeling....pain. It hurts me so to tell you all this, I can't believe it myself.
Things seemed to be going well just 2 months ago and now everything has fallen apart.
So like I said yesterday, we're back to keeping her comfortable. Maybe this pneumonia will make the inevitable speed up a little and our Princess can finally live happily ever after in eternity.
Love, Di

Sad hearts this morning,
Bethany's back down in PICU and on a ventilator.
She started having trouble breathing yesterday and they ended up taking her down this morning. She has severe pneumonia. We had a family conference this morning with 2 of her Dr.'s. One is optimistic that they'll get her through the pneumonia and the other isn't as confident. But they both agree that the damage that has been done to her brain is very severe. They really don't have hopes of Bethany ever getting any better. It comes down to just keeping her comfortable again. Scott was adamant that he doesn't want her to suffocate or be starved, the Dr.'s totally agreed.
So here we are again. It's seems like we get droplets of hope and then they're washed away again. Oh how our hearts hurt, oh how they ache. I can't believe the pain I feel, I had no idea I had the ability to hurt so deep.
Papa was supposed to go on a business trip this morning, before he left he called the hospital to find out how Bethany did over night and that's when they told him they were moving her down to PICU. He was debating on whether or not to go and I told him I think he'd better stay. We are so thankful now that he did. Our Chad is in California in tech school for the Air Force, he is so broken up. It's so hard for him to be away while all of this is going on. Please lift Chad up in your prayers too, he needs it so much.
I don't know what else to say right now.
Til next time.
Love, Di

Good Sunday Morning,
Bethany had a rough day yesterday, she was in a lot of pain. They gave her morphine and then finally gave her a drug to help her sleep. This morning she seems much better. A little crying here and there but nothing like yesterday. Memere was up here at 5:00am and Papa and I got here about 8:30am with my Dad and his wife Gwen. They're visiting from Arizona. Bethany even gave Gwen a little kiss on her cheek.
They're planning on maybe letting Bethany go home Tues.. Her sodium levels are giving them fits, it keeps dropping very low. They are actually putting salt into her feeds. They'd like to get that taken care of before they send her home too.
Scott, Renee and Gideon spent the afternoon til evening up here yesterday, just the 4 of them having some family time. It's not the way most families have family time is it? Bless their hearts. Those two continue to amaze me with their strength.
My heart is continually filled with warmth from all of your emails and prayers.
Trust me, my heart needs it, thank you.
Love, Di

06-10-05 #2
12:20 pm, The surgery is over, it went well.
They were able to internalize it on the left side. So now she has a whole new shunt just on the left side of her head instead of on the right. She has 2 new incisions on her tummy for the tubing.
She seems very uncomfortable, that's why I'm in here writing right now, it breaks my heart to see her like this and there's nothing I can do for her.
I'll keep you posted.
Love, Di

7:30 am, She's in surgery right now..................

06-09-05 #2
I write to you as tears roll down my cheeks. They want to do a whole new shunt on the left side. It's scheduled for tomorrow (Friday) morning at 7:30am. They feel that the one on the right will just keep on getting clogged. I sit here not knowing what else to say, I have so many thoughts running through my head, some that I don't even want to put down in words.

Bethany, my sweet sweet Bethany, I'm so sorry, I'm so very very sorry. I don't know why God chose you, I don't know why God chose us, but I trust Him, I trust with with all my broken heart.
Love, your "Grammy Cakes"

Good Morning,
Well there's talk of re-inserting her shunt tomorrow which doesn't make sense to us since her fluids are as dark as coffee and with the inflammation in her tummy. The cultures came back clear, no infections. Renee talked with the Dr., not the Neurosurgeon, and he understood our concerns and said we'll need to discuss that with Dr. Lamond.
Papa and I sat by her side last night til she fell asleep and as I told a close friend of mine, we just sat holding her hands, staring at her and remembering all of the wonderful things we used to do. We drove home silent.
We still talk like her to each other, we want to remember all of her cute little sayings.

(Bethany, just a year ago!)
We are so thankful at how much we did with her and that we have no regrets. We long to make more wonderful memories but we long for her to be comfortable and at peace too.
What is your plan Lord? What is your plan?
Bye for now.
Love, Di

Good Morning,
We had quite a scare yesterday but thankfully all is better.
Papa got up to the hospital about 9:45 and Bethany was very, very uncomfortable, about then the nurse noticed there wasn't any fluid coming out of her shunt so she called Dr. Lamond (Neuro-surgeon) and he came running into her room and pulled about 30cc's of fluid out of her shunt, started barking orders to the nurse and said take her down for a CT scan STAT. Papa called me, I called Scott and Pat, Pat called Renee (who is currently taking classes to become a CNA because she can actually get paid to care for Bethany). Pat and I got to the hospital just as Bethany was coming out of the CT scan. She was comfortable now since the Dr. had taken the fluid out. We found out that the shunt was just clogged, thank goodness. When the Dr. pulled the fluid out he also pulled the clog out. It sure scared Papa who in turn scared us when Dr. Lamond literally ran into her room. What we realized after the fact is that he was in the middle of surgery so he was also running because of that. But he still must have been very concerned to leave during surgery to come check on her. Whew! What an ordeal!
Anyway, her CT scan on her tummy shows inflammation in her tummy still from the infection. They want to wait until that is cleared up before reinserting the shunt. Also the fluid coming out of her shunt is still very dark. The Dr. said there's some blood in it but not much, it's mostly dark because her protein levels are so high, they are trying to figure out why that is. They are also talking of doing a bone marrow biopsy because her counts are very low again. This is disturbing to all of us, we're afraid they're looking for Leukemia.
As you can tell, we're are getting very full right now. So much info, not enough answers, too many questions.
Keep up the prayers!!!
Love, Di

Rough night for Bethany, her blood pressure is now going sky high again and she's still so very uncomfortable. Papa's been up there for a couple of hours already and I'm getting ready to go. I stayed home to get some things done this morning since I haven't been home the last few weekends, plus that gives Papa some much valued alone time with his Princess Buttercup to just talk or sing or read stories or just sit by her bed holding her little hand in his big ol' Bear paw. (He wears a size 16 ring, that's a big Bear paw!) He holds her hand just letting her rest in the quiet and letting her feel his strength. She will never know how weak he really is on the inside for her.
Last night the plans we had changed and Papa and I went to play putt-putt, we laughed we giggled we teased. Then we went out to dinner and sat side by side holding hands, talking, and then the tears began. We talked about how much our lives have changed, how usually we're trying to figure out with our friends how much camping and fishing we can get in this summer. Now, it all revolves around one very special little girl. Everyone's lives go on, as they should, graduations, weddings, camping, although all of the things that were so important to us have changed. It will be a year tomorrow that the Arvada Firefighters did a benefit and raised over $10,000.00 for Bethany and Jim Clark heard about Bethany through my brother's web site and raised over another $4,000.00. I remember wondering why this was all happening for our girl when I knew there were so many other families with what seemed like bigger needs because at that time, Bethany was doing pretty good.
Not knowing that in 2 months things would change so drastically. Because of all of this money we were able to pay off the medical bills and because donations still kept coming in we could remodel the kids rental home to make it easier for a wheel chair. We had no idea, but God knew all along. He still knows.
What a year, what an amazing painful 4 years for Bethany. Papa and I realized as we talked last night that even when we're laughing on the outside, we're always crying on the inside. I like to be silly and I love to make people laugh, and I try to carry on with that because it feels so good to laugh. I work with incredible people, as I'm sure you've already figured out and they continue to help me and support me and allow me to laugh and allow me to cry. I try so hard to not cry around Papa, it hurts him so. There aren't many days that go by that we don't cry, some more than others, but there are never days that go by that we don't laugh because of all of you that stick so closely by us. And for that I thank you from the bottom of my heart. I also thank all of you for letting me put down in words my true heart feelings. I love you.
Well, I'm anxious to get to my girl so I'll go now.
Love, Di

I'm sitting here in the "teen room" at PSL reading your emails and your prayers and my heart is so touched. Thank you!!!
Our little girl is about the same but it does seem like a little less crying. They plan to do a CT scan on her tummy Monday to see if there's more going on there that's causing her pain. We had noticed this morning that she was doing great until after her feeds and then she started crying. The Dr.'s are all trying so hard to have answers for us but they are baffled too. We talked with her Neuro-Surgeon about possibly transferring her to Childrens to maybe get some new and different opinions and he said he understood why we would want to but that all of these Dr.'s confer with each other and it's not like they have extra info over there that they don't have here. I know in my heart that she's getting the best care but I want more for her. I want her to be O.K., I don't want her to suffer anymore.
I work for Pediatric Dentist's and David even came up today to check her teeth to make sure there wasn't something going on in her mouth. All was well. Bless his heart, I could see he was at a loss for words seeing Bethany. He and Bethany had a unique relationship before all of this, he made her cry fixing her teeth and she cracked him up. He is such a sweet friend to have, too often he's like another ornary brother:).
Well my friends, til next time, keep up the good work!
Love, Di

Our precious little Princess is still crying and crying. Oh how it breaks our hearts. The antibiotics don't seem to be killing this infection and she's having reactions to them so now they're trying a different one but it could cause seizures. I guess the infection in her brain is a type of meningitis, so when it was draining into her stomach it caused an abscess in her stomach. The fluid that is now draining on the outside of her body is getting darker and it's supposed to be getting clearer. The Neuro-Surgeon said he thinks it's her brain sloughing off dead cells from the damage from the strokes. If that's the case why didn't it start out dark?
So much information, so many questions and it seems like we hear bits and pieces here and there and try to make sense of it all.
Things were going so well before they decided to revise her shunt. I guess there was an infection on the outside of her head that they didn't know about before they opened her up and that's what started all of this.
So as you can see, we all have very heavy hearts right now, we are all struggling trying to hold ourselves together.

God, oh God, please God, bring peace on our Bethany, comfort her, hold her in your arms, let her know you are God and you are with her.
In Jesus Name, Amen

I'm so sorry it's been a while, I was on a business trip and got back in last night.
We went straight to the hospital to see the Princess, she was not doing so well. Her platelets were low so they were giving her a transfusion and she was crying and crying. They finally stopped the transfusion because it was making her so uncomfortable, they'll start over today.
She also has another staff infection in her blood, I guess just more antibiotics for it. So I'm not sure how long before they can do the surgery to put her shunt back on the inside but it doesn't sound like anytime soon to me.
It seems like she was doing so great and then after they messed with her shunt she's been uncomfortable since. Oh how it breaks my heart to see her cry and there's nothing I can do to help.
Well, I have to get to work now, I will keep you all posted. Thank you for your continued prayers.
Love, Di

Hi there,
I just wanted to let you know about one of the pictures, the one of the star. There's a castle there called "the castle of miracles". On the ceiling there are stars from every child that has visited there, over 46,000 right now.
Every star has the child's name on it even though you can't see it on this picture. A precious yet sad sight, there are so many sick children and these are just the ones that have visited GKTW. The picture is Bethany's star. There are volunteers that work in the castle that help you find your child's star, then they climb up on the ladder and take a picture of it for you. Many of the volunteers come into the castle to pray for the little ones and their families. What a place, what a precious wonderful place full of precious wonderful people.
The Princess is doing well, no fever since the surgery. Mr. Gideon is being a little ham and eating up the attention from the nurses.
Have a great day!
Love, Di

Good Morning! We got in last night and went straight to the hospital, yes the hospital. Bethany has a staff infection in her shunt and had to have surgery on Sat.. They brought the shunt on the outside of her head until the infection is clear and then will put it back in internally. She will be in the hospital for 10-14 days. It was killer to be away during all of this but Renee and Pat kept us informed with every step and assured us all was O.K.
Bethany looked good when we got there and even gave us all kisses.
We had an amazing trip! Give-Kids-The-World blessed us last year when we took Bethany and blessed us again this year with volunteering. This place is amazing, and the people that work there and volunteer there make it most amazing. We met lots of families and little ones with huge needs and some that looked like there was nothing wrong like Bethany looked last year other than no sight. My how things have changed in a year.
Papa and I even won an award for going over and beyond, they gave us a sweet little plaque. People of all ages and everywhere in the world come to volunteer there, it is very moving.

Remember to get to a Perkins to get your bracelet to help fund GKTW!

Anyway, I have to get ready for work (boo, hiss) back to it.
I will keep you all posted of course on the Princess.
Check the site for pictures.
Love, Di

Well helloooo there!
This is Papa Bear. Grammy is sooo excited, that's she's beside herself and can't write.
No. I didn't shove her in the closet this time. I promise! I wanted to!
Anyway guess what? What the hockey puck is going on here?
Grammy and Papa are leaving for Give Kids The World in Orlando for a week.
Holey Guacamole, we're going to have so much fun!
Last year in April, Make A Wish sent Princess Buttercup (and her Bear went with her), to Give Kids The World. She loved it. We loved it, and swore that we would come back someday and bless other families and help to make their visits special.
Whoa Grinelda, Grammy gets to help out with the horseback riding. She'll say "Whoa Grinelda, when I say whoa, I means WHOA". And then she'll put a saddle on…. (the horse, not herself). I'll get to read stories in my special way. I hope the kids don't think I'm nuts, 'cause that's My secret. Shhhhhhh. There will also be an appearance by an extraordinary train engineer. Nope, his name ain't Casey……it's Papa! Round and round, they whirl and twirl and twirl and whirl…..Grammy, how do you stop this crazy thing? She smiles a good-humored smile and pushes the faster button on the Carousel.
We'll spend time dishin' up ice cream in the 24 hour shoppe…Ssplattttt, uh oh Chongo, right in the face! Hopefully some ice cream, will actually make it into the cones.
We're gonna make sammiches (sandwiches), green eggs and ham (breakfast), and find all sorts of games we can play…it is FUN to have FUN, but you have to know how!
So, while we're outta here, there may or may not be daily updates on the Princess. If Grammy and Papa can look high and low and find a trusty, rusty computer…

At Give Kids The World, they have the Avenue of the Angels where paving stones are engraved with someone special's name. Grammy and Papa are hoping, hoping, hoping that the stone we bought for Bethany will be set. Drat! These things take time, and we want it done now! 'Cause Grammy is spoiled. Rotten.
No new news from the Kingdom of Buttercup. All is well, and no decision on when they'll do the next surgery that Grammy mentioned earlier.
Oh, and by the way, there will be bracelets supporting Give Kids The World available from Perkins restaurants between May 14th and 29th. Trust an old Bear, this is a good cause.
Well, I'd better get packing. Bears need to make sure that their fluff is stuffed and their stuff is fluffed. And if you happen to look up in the sky, and you see a grumpy growly grizzly bear flying with his favorite Bird……run!!!!!! Bears can't fly.
Papa Bear

Good Morning one and all,
I guess a pretty good weekend for Bethany, although she cried off and on.
Renee and Pat took her to Children's Hospital yesterday to check out therapy there. She hasn't been getting very good therapy through the home care. The Dr's there were very attentive and aggressive. They want to do another surgery . Her feet have become so atrophied that they point straight down. If they don't do something soon it could become irrepairable. It breaks our hearts to think of her going through another surgery. Papa and I have such mixed feelings about it but we know Bethany is showing such signs of improvement that we don't want to inhibit her from being able to do all she will be able to do some day.
The good news is, they are going to make her a custom made wheelchair that will fit her, in pink! That will be so nice to have. I guess because when we left PSL back in the fall they didn't expect her to make it, in-fact they sent her home with hospice not knowing who they were dealing with, "the great Princess Bethany", so they didn't pursue aggressive therapy and then when they did switch her back to just home care the therapists have not been consistent with her care. I know, very frustrating, we could just scream.
Please pray for Scott and Renee to make the right decision, please pray for peace for all of us and to give the Dr.'s and all of us the wisdom we need. I wish I knew what the future holds. I wish, I wish, I wish.

My poor sweet Bethany, my heart hurts so much for you, I'm so sorry, I'm so very sorry. I wish I could make everything better for you.

Good Morning, Bethany's had an O.K. week. She had a seizure yesterday that was pretty violent and scared poor Renee. Renee had to go get a neighbor to help administer her meds to stop the seizure. Come to find out this neighbor works with handi-cap kids and told Renee any time she needs help to just holler. It's nice to know she's there.
Other wise I guess things are O.K., her neurologist said 1 seizure in 6 months isn't too bad but if it happens more often we'll have to run some more tests.
That's about it for now. I'll talk again soon.
Love, Di

YEAH! Bethany got to come home last night!
The Dr. finally released her about 6:00pm. I bet she's happy to be home, I know she's always much more content and does so much better at home.
Memere is doing well too. Now she, Dave and Kerry have all ended up with chest pains or irregular heart beats due to the stress. Stress is a very wicked thing isn't it. I think we go along feeling like we're handling things O.K. and then all of the sudden our bodies say "no your not". Then we have to pull our selves back together and put our faith back where it belongs, back in God's hands. We try to handle it on our own and then we get a reminder of who really is in control and it certainly isn't us.
On Good Morning America this morning they had a story of a firefighter who had severe brain damage and after 10 years just started talking again last weekend and carrying on conversations and up walking around.
Wow, that is amazing! It sure gives us hope!
I hope you all have a good day!
Love, Di

Our little girl has had a great recovery! If all stays well they'll let her go home tomorrow.
Papa and I had the pleasure of having a sleep over with Mr. Gideon last night.
What a delight! He went to bed about 8:30 and woke up about 7:00. Like our friend Joe told me, he has the same sleep pattern as Papa and I :). Gideon is so much like Bethany in that he wakes up with the sweetest smile on his face. It was such a joy to have him over and at the same time we sure miss our sleep overs with Bethany. Maybe one day we'll get to have Bethany for a sleep over again.
Well that's all for now.
Love, Di

04-29-05 #2
The surgery is over, she did well. They also removed her medi-port while she was under. Her ventricles didn't seem to have too much pressure but hopefully this will help her. I guess from the strokes her brain has shrunk some and so the ventricles are taking up that space.
She was awake soon after the surgery in the recovery room and took a deep breath when Papa told her he would come back and read her more stories tomorrow. I think the nurses will be excited to hear that too. You haven't heard a story til you hear a Papa story.
Thank you all for your continual prayers and support, we truly feel them in our hearts, and trust me, our hearts need them.
I love you all more than words can ever express.
Love, Di
P.S. Memere is well and made it here in time.

What a week!!! Bethany's scheduled for surgery at 1:00 today. They had cut back her feeds to cut back the calories and I guess she was not getting enough protein or sodium because of it. So they will up her feeds a little to get her enough but without making her gain weight. She's at 54lbs from 65lbs but should be at about 45lbs.

Pat,(Renee's mom, or Memere) went into the hospital yesterday with chest pains. So far everything is coming back O.K. but they kept her over night and are running a couple more tests today. I'd like to see them just try to keep her away from Bethany today, they'll be messing with someone they don't want to mess with, A Grandmother with a child and grandchild that needs her.
Anyway, one more person to lift up in prayer today for us please. Thank you all so much! I think Renee is beginning to feel like this is becoming more than she's able to handle, although the girl still keeps smiling, amazing.
I love you all so much and I continue to rely on your support. Thank you.
Love, Di

Good Morning, your prayers are working. The Pediatrician at PSL thinks that it was just that she was dehydrated because her stats are coming back up. Her blood pressure dropped again yesterday to 54/15, I left work and went down there and by the time I got there things were going better again. They kept her over night but moved her up to the ped's floor and if she does well they'll send her home today and have her come back Friday for the surgery. She woke up for a couple of hours yesterday and Papa was able to entertain her, the nurses and myself with a couple of stories.
Til there's more news, all my love, Di

Her counts are better this morning. Dr. Lamond was very concerned last night that it's her kidney's but I guess it's the waiting game now. They plan on keeping her this week and if all goes well they'll do surgery on Friday. We are all so scared that it's her kidneys because she's had trouble with them before.
Please continue to lift her up in prayer. Thank you for standing by us.
Love, Di

No surgery today. Bethany's BUN (kidney's) count is way up and she is dehydrated. They are going to hydrate her and keep a close eye on her counts. If all goes well they may send her home tomorrow and reschedule surgery next Monday. They're not sure why she's dehydrated and why her counts are so high. Dr. Meyer, her Pediatrician has been monitoring her closley so we're not sure what's up. I hope it's not her kidney's acting up again. I will keep you all posted.
Love, Di

Good Morning everyone,
We found out from the neurosurgeon yesterday that Bethany's ventricles are very swollen again. He wants to do surgery on Monday to revise the shunt. This is a surgery that she's had several times. He was pleased to hear how well she's doing and he thinks she'll even do so much better after this surgery because she has to be feeling a lot of pressure. She usually is very uncomfortable when her ventricles are swollen but this time she hasn't shown that. We are so sad that she has to undergo another surgery but we are encouraged that this should help her do even better.
The surgery should be around noon on Monday and then she usually stays a couple of days in the hospital.
Of course I will keep you posted. Thank you again for your prayers and support.
Love, Di

04-19-05 #2
Bethany had a C.T. today and tests on her vocal cords, there's movement in her right vocal cord! ( they were both paralyzed from the strokes)The Dr's not changing anything yet until there's more movement but this is good news. We will get the C.T. results back from the neurosurgeon on Thurs.. I'll let you know!
Love, Di

There's more pictures! I promised pictures more often and here they are.
One is of Mama getting kisses, it is so precious! Others are of Bethany with the puppies, so cute.
Kerry will also be posting a picture of Renee's Aunt Linda and cousin Valerie with Bethany and a "prayer shawl" that their church made for her. The person that makes it prays the whole time for the person receiving it and then the church prays over it and then that night we all prayed together for Bethany. It was soon after that that Bethany started showing so much improvement. Glory be to God! He is awesome and prayer works. We still don't know the outcome, but we needed encouragement and we got it.
Thank you Heavenly Father for being so awesome and hearing our cries and knowing our hearts. Thank you for entrusting us all with this precious little girl that has brought your love to so many that needed to know.
Thank you Lord, for being Lord and allowing us to feel your presence. Thank you for all of your precious people that pray for our princess. I love you Heavenly Father, I love you, I trust you, I give you my all.
In Jesus name, Amen

This is Papa Bear. (I had to shove Grammy in the closet so I could write this real quick)
Years ago, I wrote a song that started with the lyrics "I'm sitting here with my coffee cup, In quiet awe, I lift you up". Which is a description of my morning quiet time…starting with a cup of coffee. As I was having my quiet time this morning, I was amused that I happened across Gideon. I thought to myself, I'll just read about my grandson.
It's funny that you can read a passage for years and years, and all of a sudden, it can have new meaning.
Let me share with you……
Judges 6:12-14
"And the Angel of the LORD appeared to him (Gideon), and said to him, "The LORD is with you, you mighty man of valor!" Gideon said to Him, "O my lord, if the LORD is with us, why then has all this happened to us? "
And where are all His miracles which our fathers told us about…
Then the LORD turned to him and said, "Go in this might of yours, and you shall save Israel from the hand of the Midianites. Have I not sent you?"

I thought of all that has happened to us, and to Bethany. I thought about how many times I've prayed for a miracle for Bethany(and countless others). Then I thought about the context here…God didn't answer Gideon's questions. Instead, He gave Gideon a command. Which if you read farther, Gideon obeyed and God honored him…with victory.
God has plans. Plans for Bethany and Gideon, and all of us. He'll accomplish His will.
There has been a lot that has happened, but God is with us, God is with Bethany!

Ok, now I can let Grammy out…shhhhhhh, don't tell her!
By the way, 30 years ago today Grammy and I met and fell in love!


More movement, more good news.
Renee called me twice yesterday all excited about Bethany moving. She was turning her head and later Renee said if she held her elbow up Bethany would try to pet a puppy. Oh yes puppies, I don't think I told you how the animal farm is growing at their house. Their dog just had 10 puppies a couple of weeks ago. These are pure-bred mutts, big mutts but adorable mutts. The dad is a great perinese mix and the mom a lab mix, both Scott and Renee's dogs. So if anyone is looking for a sweet big mutt, they'll be free!
So much activity lately with Bethany, we are so thankful for the encouragement.
Have a great day.
Love, Di

Another beautiful Colorado morning, the snow is blowing sideways and we already have several inches on the ground in a matter of a few hours. Yesterday of course was 65ish and sunny. Only in Colorado!
Bethany is doing very well. Mama called and asked us to watch the kiddos for a little while yesterday so she could do an errand. When we were leaving I was saying bye-bye to both of the kids and Renee said to say bye-bye back and Bethany started taking deep quick breaths and moving her mouth. It may have been a coincidence or hopeful thinking but the more I thought about it the more it seemed that she was really trying to respond. Bless her little heart, I just can't stop wondering what's going on inside her little head and how frustrating and scary it must be.
She looks good, she weighs about 52lbs now, from up to 64lbs I believe. She was crying a little but we changed her position and then she seemed fine. She had a couple of Dr.'s appts last week, no new news, no new changes other than dropping dosages on some meds. Renee was hoping to get the trach removed soon but it doesn't sound like that will happen anytime soon or even ever. Of course this Dr. doesn't know what our God and our Bethany's capable of. We all just keep the faith and the hope and continue to take each day at a time.
We sure like the good days we've been having.
Continue the prayers and the faith with us, you are all such an awesome support team! I love you!
Love, Di

Good Morning! What a beautiful Colorado morning. Only in Colorado can it snow one day and be 60 the next. It was a year ago that the "Make-a-wish" foundation sent Bethany with her Mommy and Daddy to Florida and Memere, Papa and I followed along.
What an incredible trip it was. Bethany's favorite place was "Give-Kids-the-World".

It is a place designed for critically ill children and their families to get a way a few days and forget all the pain and try to relax and have fun. After we left there we all vowed that we would come back to volunteer since this place is basically run by volunteers. Well, Kerry and I have been blessed with the opportunity to go out next month! We are so excited! We will work there in the morning from 7:30 til 12:00 and then have the rest of the day to do what ever.
Kerry is going to post pictures on the photo page from last year. One is of Bethany in a play house, Papa and Daddy were going to build her one of her own last year but just before they started, everything happened to Bethany.
I hope you enjoy the pictures.
Who would have thought a year ago things would be like this.
Love, Di

What a great weekend we had with the babies! We babysat Friday night so Scott could take Renee out for her Birthday, then Sunday we brought the kids to our house and went to the park and came back and took Bethany to her room at our house so Papa could read stories and play with her. I have to admit, I lost it a couple of times and cried but the day was so very precious. When Papa asked Bethany if she'd like to come to our house and go to the park she got very excited! She started breathing really fast. She was so content and happy at the park and in our house.

There are pictures in the photo page. I have to say, Papa is incredible, he's not just sweet he's incredible, the way he talks to Bethany just like things were the same. He describes everything to her in detail. And when he took her to her room he still had a tea party with her, and he had all of her friends talk to her in all of their voices. I sat in the living room feeding Gideon and the tears rolled down my cheeks. Bethany and Gideon are so blessed with the same man I was blessed with over 27 years ago. He is such a tender loving guy who loves to be needed.
Enjoy the pictures.
Love, Di

Wow, a lot of discussion about the differences between Bethany and Terri. The only similarity I saw was the feeding tube. My sweet husband ad-libbed for me a little in my last update by saying "so many similarities". I know it's a very different story. I also know the pain is the same for her family too. To have a happy beautiful girl one day and the next have her much different. There is a plan, there is a reason, we may not know while we're even still here on earth but I have seen lives changed and hearts softened through Bethany and for now that's that's what I hold on to, that gives me some peace.
On a lighter note now, there are new pictures that Kerry will post on the photo site today. Notice Wesley with the kids and the Easter bunny. I think he's thinking "Wow that's one big rabbit!"
Take Care all! I love you!
Love, Di

Terri Schiavo died today. So many similarities to our Princess. So many questions.
Good Bye Terri. I'm so sorry it was like this. Thank you for bringing awareness to us.

We're home from Omaha safe and sound. We had a good trip. Cell phones are great aren't they? We felt so much more comfortable knowing that anyone could reach us any time while we were away. (as long as you have service of course)
Bethany had a good Easter from the sounds of it. The Easter bunny came to their house on Saturday to visit both of the kiddos. Renee said she got pictures so as soon as they're developed we'll get them on.
I read Pat's update (and I cried), I know how she feels and my heart feels the same. We go through all the motions to try to keep some normality but our hearts hurt so deeply. Kerry and I had a lot of time to talk during the drive, we actually didn't talk too much about Bethany because we both didn't want to upset the other but we did talk some about her. Although she is constantly on our minds. I told Kerry that no matter where I am or what I'm doing, whether it's laughing or eating or watching a movie, my heart hurts always for that girl. I can be laughing on the outside or being my goofy self and making others laugh and my heart hurts. Kerry said it was of course the same for him as I know it's the same for Scott and Renee and Pepere and Memere and many of you too. We all miss the way it used to be, we all miss our silly, loving little girl with the nasally voice and sweet kisses.
But I am thankful for another day of kisses and another day of having our Bethany with us.
It will be a year of firsts and a year of heart aches for how things used to be. Then we will deal with the second year of how to cope, but with all of you by our sides and with The Lord God as our guide, we will make it.
Thank you all.
Love, Di

Hi everyone!

Another wonderfully quiet week for Bethany!
She had a Dr.'s appt. yesterday with her "G" tube (feeding tube)Dr.
It all looks good and they put in a new one.
She had an appt with the neurologist Tues. and all went well there too.
No new news to tell I guess.
She has lost over 10lbs and is beginning to look like herself again. They're giving her less calories to help her loose weight and it's working. Mr. Gideon is rolling around and squealing and laughing and being such a little cutie. He's such a precious little guy.
I hope you all have a great Easter. Papa and I are going to Omaha to visit my Grammy. I'll write again next week.
I love you all!
Love, Di

Hi friends and family, (It's kind of funny, I'm always trying to come up with some new original greeting)
Anyway, All is going well in Bethany Land.
There has been so much talk lately with Terry Schiavo and her husband verses her parents and her feeding tube. First let me start off by saying, I'm not here to judge any of them. I haven't walked in their shoes. People ask us about Bethany and life support, Bethany is NOT on any life support, like Terry, she has a feeding tube and Bethany also requires a little extra oxygen so she doesn't have to work so hard to breath. I don't consider a feeding tube "life support" any more than you would consider feeding your child 3 meals a day "life support". I can't imagine denying someone food. I mean the slow agony of starving to death. I guess after the excruciating hunger pains, all of your organs would slowly shut down. This is not a humane way to let someone die under any circumstances, it would take weeks of pain before they actually died. And why? Because they don't look "happy" by our standards? Because it's not what we consider a "good life"? Or is it because it's too hard to watch someone in this condition day after day, year after year?
After my little melt down last week I had to pick myself up and pull myself together, I realized that this may be a very long process we're in for. Bethany may get better and she may be like this for another 10, 15, 20 years. Who knows? I certainly don't. So I think I am moving into a different state of mind. I think I finally am grasping that this may take a long time and I need to let the little steps and big steps be what they are and not over react with each. I was advised of this in the beginning by a couple of you but I guess til you're actually at that point, you can't mentally make that decision. I know I will still miss who she was deeply, I know I will still hurt deeply throughout her life and beyond, until we're in heaven together, but I am ready to face the long road with all the love in my heart for my little girl.
As for Terry, I will pray that her husband and the courts really think about what this means to starve her to death. I will mostly pray for peace and comfort for Terry.
Thank you family and friends for being here to listen to me.
Love, Di

Thank you everyone for your words of encouragement and support! I am feeling much better now, it was just a moment, one of many that I experience. Always subject to change with out notice.
Bethany is having a good week and Mr. Gideon is too. We were over last night to drop off some supplies and everyone seemed happy and content including Mommy and Daddy.
It makes a Grammy's heart warm to see everyone happy.
The surgeon told Renee that it's up to them when they want to have the medi port removed, no one's in any big hurry.
Kerry's mom is much better and back home after staying with us for about a week and a half. It was good to see her doing so well.
That's about it for now, thanks again for your prayers and pep talks (Linda:)). I need them!
Love, Di

Good Monday Morning to you all,
Our little Princess had a good weekend. Her Mommy and Memere took her to the parade on Saturday and she got to ride on the Neurofibromatosis (NF) float. Renee said she seemed to really enjoy it.
Papa and I spent a couple of hours with the kids yesterday while Mommy and Daddy got out. We loved every second of it.
So why do we come home and cry? I know, I know why, and I try to tell Papa to be thankful, and and he is but my words are hollow in my heart. I want things to be back to normal now, I want my girl back. It's not a lack of faith, it's a lack of strength right now. I came into the office this morning and poured my heart out to one of my Christian sisters here. I want to write only happy updates and make everyone feel all warm and fuzzy but that's not being honest with you, or myself. Karyl encouraged me to be honest so that when I go back and read I will remember how I truly felt.
I hurt, I hurt deeply and I can't deny it.
I need your prayers today, I need God's strength.
Love, Di

BETHANY HAS A VAN!!! Thanks to Adaptive Automotive and the wonderful people there that sold us the van at such an incredible price. Also a huge thanks to all of you that have donated over the months so that we had enough in the Bethany fund to purchase it. I know many of you still want to donate to replenish the fund and that is so wonderful and I thank you ahead of time. This will be so great to have, Scott and Renee were so tickled. Pat and Dave picked it up yesterday and Pat washed it and they took it over to surprise Renee with it yesterday. Renee called Scott and told him and Scott called me and was so very excited. Papa and I went over to check it out, it's very nice.
There are some new pictures on Bethany's photo page. One is with her girlfriends Emily and Andrea at the mall at Dillards Clinique counter.
When we were over last night, Bethany was really crying a lot. Renee thinks it's because she caught this cold that Renee and her mom have. Please pray that that's all it is. Oh how it breaks my heart to see her cry. She was supposed to go see her neurologist yesterday but Renee hated to take her out when she was feeling so bad.
Anyway, enjoy the new pictures, hopefully there will be more more frequently now since Papa and I just bought a new digital camera. We won't have to wait to get pictures developed.
Please know that I love you all so very much.
Love, Di

Papa and I stopped by after work last night to see the kiddos, everyone is doing great. I must have sounded in despair in my last update but it was really meant to be more light hearted than it must have sounded.
I know Scott and Renee are striving to have as normal of a life as possible bless their hearts, they just happen to be surrounded by so many who care and want to help and be with the kids as much as possible.
Scott and Renee bought a little bunny for Bethany. Oh my goodness how cute it is. It's pure white with black tips on his ears. It lays on Bethany's lap and we take her little hand so she can pet it and it just lays there for her like it knows she can't move. They named it Wesley because Bethany is Princess Buttercup, named from The Princess Bride. (Scott's favorite movie from the past).
Good News! Pepere (Dave), Renee's dad has found a van with a wheelchair lift. The company is willing to sell it for about $2200.00. Dave has been over to check it out a couple of times. (Thanks Pepere!)
He feels it's in pretty good shape. What a blessing this would be to transport Bethany as she's getting so big and heavy. Anyway, some have been asking if they can make a donation to go specifically to the van. Yes you can, just send it to the bank on her web page and make a note that it's for the van and they will let us know that the donation is for the van.
We are so tickled.
I'll keep you all posted!
Love, Di

Hi there! Bethany had a good weekend I guess. We didn't get to see her, Scott and Renee were having a rough weekend together so they weren't up to people coming over. They're fine now but Papa and I have sad hearts. We always call first and ask if we can come over out of respect, I guess that needs to end.
Privacy schmivacy, what about our hearts?? :^)
...just kidding of course,
...I completely understand where they're coming from and feel for them.
Anyway, hopefully we can go over tomorrow after work.(yes we will still call first)
Bethany may have to have surgery soon to remove her medi-port, it seems to be clogged or cracked. They really don't use it too much any more but it's nice to have it when they need it. We should find out for sure this week when Renee calls the surgeon. They were at Dr. Meyer's office Friday checking it out.
Of course I will keep you all posted. I love you!
Love, Di

Good Morning!
The Princess has a cold as does her Mommy. She coughs and then cries. Bless her heart. Please pray that it doesn't get to be anymore serious than a cold. Other wise things are going well.
Kerry's mom is being released today to come to our house for a few days til she feels comfortable to be back home alone. She lives about an hour or so away up into the mountains so it's important that she is strong enough to take care of herself.
Take care til next time. I love you.
Love, Di

"Where's Bethany?" "Where can she be?"
That's what we wonder when we look into her beautiful eyes and she stares out through her long curly lashes.
"Can you hear me?" "Can you feel me?"
A flood of questions runs through our minds.
Papa and I had a great day with her and Gideon on Saturday. We took them to the mall to see her friends, Andrea and Emily at Dillards Clinique counter. Then we strolled through the mall on the bumpy floor that Flatiron's has. Bethany seemed very comfortable and content. Gideon was so very good, he's such a good baby.
So why did Papa and I wake up with such heavy hearts Sunday morning? I guess because we miss "the good old days". We are so very thankful for times like Saturday and that we still have her but our hearts still hurt so deeply for the girl she was. We talk like her around the house all the time.
I wasn't going to share all of this, I wanted to be so up beat after such a great day. But then I decided I needed to be honest with my feelings so when I go back years from now I can remember these feelings and how my heart flops from one emotion to another in seconds.
Oh how I love this girl! I can not believe how strong the feelings and emotions are that go along with deep love. The love that one has for their children and their children's children is beyond comprehension. How do some purposely hurt their children? It's beyond me.
What a great day we had Saturday. I can't wait to do it again!
Love, Di


Bethany had an MRI on Tues. She, Mama, Memere and Papa went to her Dr's appt. today to get the results. The EDAS surgery (the surgery to relocate her veins into her brain) worked! She's getting blood flow to the brain! Her tumors seem to be stabilized, they're growing with her, and no more strokes!
Her ventricles look enlarged and Dr. Lamond said if she seemed uncomfortable he would do surgery but since she's comfortable he's just going to keep an eye on them. So all in all, very good news.
Papa went over for a little while this morning before a meeting and read stories to both of the kiddos. He said Gideon laughed and laughed at the Cat in the Hat. Of course if you heard Papa tell these stories you would laugh too.
Again and again, thank you for your prayers and keep up the good work!
God is listening!
Love, Di

Good days! Good days lead into good weeks! YEAH BETHANY!
Thank you Heavenly Father for the good weeks we've had! Please continue to work in Bethany and continue to keep her comfortable and please Lord, if it be your will, heal her.
In Christ's Precious Name, Amen.
Keep up the prayers! Thank you!
Love, Di

Our girl is having a good week! The physical therapist and speech therapist both came to work with her today. I guess Mr. Gideon was trying to steal the show and was chattering away laying at the end of her bed while the speech therapist worked with her. Silly boy!
Most of Bethany's blood work came back good today. The platelets are up and the B.U.N (kidney's) is up. The sodium and iron is still a little low.
I have to tell you a sweet story: The Christmas before last I bought all the girls in my family a "prayer" bracelet to remind us all to pray for Bethany. Well the weekend before last I lost mine, I was so disappointed. Well, my incredible neighbor, Tammy, came to my door on Sunday to give me a charm that's a "prayer" box that she bought me last weekend because of everything I'm going through! Wow! I was so tickled! I explained what had happened to mine. It brought tears to my eyes. Tammy and John have been so special to us through all of this. I appreciate how they, and all of you stay updated on the web with what's going on. It shows me how much you all care. I feel all of you right beside me holding me up in prayer and thoughts. I don't even have to hear from you and I still know. I am so blessed to have all of you in my life! I will never forget any of you. I love you all so much!
Love, Di

Good Saturday Morning!
Bethany had a great week. Her mommy, being the "super women" that she is, took Bethany and Gideon out on her own Thurs. and again on Fri.! She said Bethany loved it and so did she. Renee never ceases to amaze me. She had to push the wheelchair and pull the oxygen with one hand and hold Gideon in his carrier in the other. On Fri. she said she got smart and put Gideon in his little papoose thing. Wow, where does she get the energy? It goes to show God knew what He was doing by blessing these young kids with Bethany!
I had a dream about Bethany last night, I dreamt she was starting to smile and trying to talk. I was telling her to say "I love you" and her lips moved and she breathed out "I". I was so excited! I can't wait for the day!
Bethany, Bethany, Bethany, how I love you!
Love, Di

Hi everyone,
Our Princess is having a good week, that means we're having a good week.
Renee and Papa took the kids for Dr. check up's on Monday and they're both doing well. Papa loves to do that stuff! He takes Bethany in his truck and he talks to her and tells her where they're going and what the weather is like, and describes what everything looks like, the colors, and all kinds of fun stuff. They talk to "Windy Shield" and "Dash, Dash-board", of course they all have different voices when they talk. :-)

Kerry's mom is on the mend, just got out of ICU, and doing better.
So, all in all a very good week.
I love you all!
Love, Di

Good Morning all!
We had a pretty quiet weekend for the most part. Bethany had a great weekend, she seemed very comfortable. Papa is going over to help Renee take the kids to their Dr. appt's this afternoon. Renee insisted that she could do it herself and I don't doubt for a second that she could but it's so much work. So Papa is more than happy to come over and help. I'm so thankful for Kerry's boss to be so understanding to let him come and go as needed.
Kerry's mom is still in critical condition in the ICU at St. Anthony's. She's doing a little better but is still very sick. I guess it's rare that a person survives from septic shock but so far she is. What an ordeal! Kerry's brother and family came in from Ohio to be here for her.
As always thank you for your prayers and emails and cards! I appreciate everyone of you!
Love, Di

I want to share with you what a very special new friend is doing for Bethany. He lives and works in London and is a freelance writer and photographer and is doing a story on Bethany. He doesn't usually write these types of stories but he stumbled across Bethany's story through my brother's site,
(a little plug with weddings and graduations coming up:-) because he and his web site has done so much for Bethany) and was so moved to do this. Here is a little of what he wrote to me this morning:

Okay, I am going to write the story, asking the world to pray for Bethany!!! You see, there is something special about her, I knew it the moment I saw her photos - the moment I read about her. She's something special, Di, and I know she will make it!!! Don't ask me how I know, but I just know!!! And please understand, I have been around the terminally ill, and I also know that sometimes it is better for them to pass on. I just really don't think that is the case with Bethany!!! I don't want to write much about the story, but rest assured that I now know how I will do it!!!!

I think we all need to encourage Danny's faith and enthusiasm. I know he has encouraged me!

Love, Di

Good Morning all,
Our week is ending up much better than it started.
Bethany's feeling great! Papa and I stopped by last night and I gave lots of kisses to both of my babies!
Kissy, kissy, kissy, mmm can't get enough of that!
I took Renee shopping last night and we bought a cam-corder so she can tape Bethany's progress and show it to the Dr's since they only see her at her worse.
Kerry's mom is on the road to recovery, it was touch and go all week.
I talked with my dad's wife Gwen, and she said my dad's doing well, he is just very tired.
Thanks for the sweet emails and prayers!
Have a wonderful weekend!
Love, Di

Hi everyone,
The Princess is having a good week. She's comfortable and content. Her little brother is doing well also, they both have Dr's appt's monday together. I'm interested to see how much Gideon weighs, he sure likes to eat.
Papa and I had a bad day yesterday, I found out that my Dad's lukemia is getting worse and Kerry's mom went into the hospital to have a kidney stone removed and it was infected which poisoned her blood and we almost lost her yesterday. She was stable last night and the Dr's told us that the next 24 hrs will determine the out come.
Kerry and I were both just numb yesterday. I feel like I don't have the energy to even have emotions right now. I'm even sitting here feeling guilty because I feel so numb, I'm typing and re-reading trying to feel what I'm writing and I can't. It's a very bizarre feeling I'm experiencing.
Anyway, I'll keep you all posted as usual.
Take Care, I love you!
Love, Di

Good Morning,
Bethany's back home, they released her last night. They think she might be having seizures still so they're going to set up an EEG. They also are re-evaluating her meds and adjusting them.
We celebrated Papa's birthday at their house last night, Bethany was sleeping so sound and seemed very comfortable and content to be back home.
Every time when things like this happen I wonder if this is it. I go through so many different emotions and feelings. I pray, I cry, I get so scared, I try so hard to prepare my heart. Then she pulls through and I rejoice, I cry, I pray and I wonder. I watch and admire the strength that her Mommy and Daddy have and I know they are going through all the same emotions. Then I receive the precious emails, people write beautiful things to Bethany and us in the guest book and I am re-filled with strength.
God answers my prayers through so many of you. When I cry out to Him for encouragement and strength He sends one or several of you to the rescue. Thank you for being here for all of us. Bless you.
Love, Di

We've had a rough time today. We took Bethany back to the ER last night because her breathing wasn't very good and she had a temp. They finally admitted her into PICU at about 1:00am. This morning I was watching Gideon at our house when Papa called and said that I need to get down there, they thought her body was shutting down. I called a very precious friend of mine and she and her daughter raced over to take care of Gideon. When I got there things didn't seem as bad as they had made it sound to Kerry and Scott. I'm still not sure what all transpired but I know that they scared Scott, Pat and Kerry to death. The Dr. had a long talk with Scott and Renee privately, I think he just wanted to really impress on them that Bethany's getting worse not better. Renee explained to him that he only sees her at her worst, he doesn't see her on the good days. He agreed with her but also just wants them to be mentally prepared. I guess she also had a pretty violent seizure today so they medicated her heavily.
Today is Papa's birthday, not a good day for Papa. Once Bethany was stable we finally talked Papa into taking his boys to the Sportsmen's show. I talked with him a little while ago and they're having a nice time.
Up and down, up and down. To think, I used to like rollercoasters.
Love, Di

Hello my friends and family,
We're having a good week! Bethany is doing so much better. This morning Renee said she was making noises through her trach, not crying noises but like sighs and yawns. YEAH! It makes me so happy that she's not in pain anymore.
Her blood work came back, her B.U.N. (kidney's) looks better, it was very high in the hospital. Her sodium is low so Renee has to put salt in her formula or she could start having strokes again and her platelettes are low and so she may have to have another transfusion. But these are things that are easily fixed.
Renee feels so much better since her surgery too.
So all in all this is a good week.
Thank you all for your continued emails, support and prayers!!!
I love you, I need you, but especially Princess Bethany needs you!
Love, Di

Good Morning,
Our Princess had a good day yesterday! Papa spent the day over there after his boss sent him to be with her.
Thanks Steve, what a guy!
Papa says she's doing so much better. I stopped by with some meds last night and there was a house full of laughing women, good to hear! So many that help and take care of Bethany and so many that show their support and love. I'm so grateful!
Papa and I walk around the house talking like Bethany used to, we giggle and we cry. One time, and excuse me if this offends you, she asked "where the hell are my shoes?". We tried to reprimand her under our laughs. What a funny little girl. Once in all her seriousness she pointed her little finger at me and said "Grammy, I will only tell you one more time", again, I had to hold back and explain that you don't talk to me like that while on the inside I was cracking up. I remember her dumping her food on the floor from her high chair on purpose and she started laughing and I told her it wasn't funny, so the next time she did it she started to laugh and then stopped and said "that's not funny" and continued to giggle. Little squirt.
Oh how I miss her, I still see her in our house laughing and giggling. I'm so very thankful we spent every second on the floor playing with her when she'd come over. Everything stopped and revolved around her.
It still does.
Thanks for sharing in my memories this morning.
Love, Di

Good Morning,
Bethany's night went well. Yesterday they ran more blood work, they also did another blood transfusion. The Dr. wants to back off of her diuretic, he says it's drying her out too much to the point of being dangerous, she's also dehydrated from it. If she's not on it then she swells and she's so uncomfortable. It depends on which Dr. you talk to on what. It gets very confusing. She was in a lot of pain yesterday, they were giving her morphine about every 2 hours. They still plan on sending her home today. I've had the opportunity to talk with a couple of Dr's there privately and they're not very optimistic about her future still. Her brain is shrinking as are her lungs. They said it's typical after this type of severe damage from the strokes. Although parts of her brain seem to be somewhat recovering from the strokes. Renee continues to be optimistic, I admire her for that and understand, and I hope that she, Bethany and God proves them wrong. Gideon has been at the hospital with us all day every day and has been so good, he's such a good baby, just like his daddy was.
Well, til next time....
Love, Di

Good Morning,
Bethany's night went well. They took her off the vent. YEAH! The nurse told Renee at first she stopped breathing but she threatened her to put her back on the vent so she started breathing on her own. I'm not sure yet when they'll release her. We'll keep ya posted.
Thank you, thank you, thank you, all for your prayers and support!
Love, Di

01-21-05 #2
The surgery went well. She's recovering in PICU for the night. They had to put her on a ventilator for the night and hopefully get her off of it in the morning. She seemed to be resting comfortably.
I love you all.
Good Night.
Love, Grammy

Bethany's surgery is scheduled for 4:30. She is getting a blood transfusion now because her platelets are low. They did a chest x-ray and are concerned about her lungs, they said they have shrunk. They are somewhat debating on whether or not to move on with the surgery, but at this time it is a go. They moved her to PICU while they get her ready.
They had to bag her this afternoon.
She was having trouble breathing on her own for a little while.
My heart is pounding out of my chest while I type this. I don't know what to say, think, or even pray for right now. I just want Bethany comfortable and happy again, what ever that takes.
Love, Di

01-20-05 #2
Surgery tomorrow at noon. The good news is, it's not her tumors growing, the bad news, her shunt is malfunctioning again. This is typical for shunts. Dr. Smith (Oncologist) is going to draw more blood work first, he's concerned about her last blood work-up. He said some levels show something could be causing her to have more seizures. Kerry and I have felt like she was having them. Then we go to the hospital and check her in at noon.
I knew something was wrong, she just shouldn't be crying all the time. I'm so thankful God gives me the insight I need.
I'm thankful for Memere and Michel for taking Bethany today, I know it's so much work.
I'm thankful for Papa Bear sitting by her side for almost 24 hours straight yesterday to try to comfort her.
I'm thankful for Dani helping me clean yesterday.
I'm thankful that Chad was transferred to Buckley while his flight was sent to Iraq.
I'm thankful that nasty gall bladder is out of Renee and she's doing well.
I'm thankful it's Bethany's shunt and not her tumors.
See, there's still so much to be thankful for.
Be thankful with me.
I love you, Love, Di

Good Morning my precious support team!
First of all let me thank you all for your precious emails and notes on Bethany's guestbook!!! You all carry me through each day. Renee's surgeries went well. The first one was a scope down her throat to see if there were stones causing blockage. There were not. The second was to remove her gall bladder. YEAH! Finally!
She's a little uncomfortable but doing well. I guess we know where Bethany gets her toughness from.
She gets to come home after she eats breakfast. Wow, they don't mess around any more. She's excited to get home to her babies.
I got their house spic and span clean and their laundry done yesterday so Renee can come home and just be with her babies.
Bethany has an appt. with Dr Lamond today. Pat and Michel are taking her to that.
Dr. Smith talked with Kerry yesterday and called in a stronger pain med and said he was going to look at the CT from the other day to check out her tumors. And there was more blood work done yesterday.
I will let you all know the results as soon as I hear. I love you and need you all so deeply words can not describe. Thank you again.
Love, Di

Well, never a dull moment.
Renee went back to the ER last night at about midnight. She will have surgery today at 12:30 to remove the stones in her intestines and then at 5:00 to remove her Gall Bladder. I don't know why 2 different surgeries.
Dr. Lamond said Bethany's ventricles look a little swollen, but not enough to cause her so much pain. He wants to see her tomorrow and then set up an MRI to have her oncologist look at her tumors.
She is still so very uncomfortable.
"Super Papa" and Dani are at Scott and Renee's taking care of the kiddos. Pat and Scott are at the hospital with Renee and I'm bouncing back and forth trying to help where ever.
I'll keep you all posted.
Love, Di

I'm so sorry I haven't written in a few days. First nothing was going on and then it all broke loose yesterday.
Let's see, the blood work hasn't shown much yet. Yesterday Papa was off so he was going to bring Gideon into my office but while he was there Bethany was crying and crying in pain, and then Renee had a gall bladder attack so Papa called me. When I got there, Papa was holding Bethany's hand and she was crying, Papa was crying and holding Gideon who was crying. I went into Renee's room and she was doubled over in pain crying.
So being a take action person, I told Renee to call her Dr. I called Dr. Lamond, the Neurosurgeon, set up a CT for this morning took Gideon and fed him. Whew! Scott came home and took Renee to the ER., Pat met them there. Renee has an appt. Fri. with the surgeon. Oh yeah, Chad and Dani (Chad's fiance) came over and helped too. What a day!
So the CT was this morning at about 8:00, Papa and Memere helped Renee get her there. As soon as they get the results they will inform Dr. Lamond and he will call Renee.
I am so scared. Bethany has been crying so much, I'm afraid her tumors are growing. They told us before that if they do start growing there's really nothing they can do but keep her comfortable with med's.
So here we are, again, in waiting, scared.
Love, Di

Good Morning,
We haven't heard anything back on the blood work yet. I guess no new is good news. I'm sure if there was something going on we would have heard. There's an MRI scheduled in February.
I talked with Renee this morning and she said Bethany had a rough night. They gave her a suppository and that seemed to help. It breaks my heart for her to hurt.
When I stopped by last night both babies where sound asleep on Bethany's bed, they looked so precious.
I love-uh, love-uh, my babies!
Have a good weekend, if I hear anything new I'll pass it on.
Keep up the prayers!!
Love, Di

Good Morning,
Still all is quiet.(Yeah) The nurse should be drawing blood today.
Hopefully we will get the results this afternoon. I will let you know how it turns out. I love you all deeply.
Love, Di
P.S. Thanks to those sending encouraging emails to Papa Bear, it's helping him so much!
Keep up the good work!

Good Morning,
A pretty quiet weekend(yeah). I haven't been able to go over and spend time with my babies because I have a sinus infection, but that didn't stop Papa! Oh No! He spent a couple of hours Friday afternoon with both babies and a couple more on Saturday. He thinks this Grandpa stuff was made just for him.
I think he's a baby hog!
Mr. Gideon managed to spit up on Papa and potty on him too. Way to go Gideon! That's my boy!

They didn't do an MRI on Bethany yet, they want to do some blood work first to rule anything else out. Bethany's been better this weekend I guess but Papa said she was really sleeping sound both days he was there.

So, as usual, I will keep you all posted.
Love, Di

Our Princess is still uncomfortable. Renee is going to call her Neuro surgeon and see if we can get an MRI to see if her tumors are growing or if her shunt is malfunctioning. I picked up some more tylenol with codeine and took it over to her tonight. I didn't go in because I feel like I'm coming down with a cold and I don't want to pass it on to her. It kills me to not be able to go in and kiss her.
Our neighbor, Mike, brought over some more gifts from the elementary school tonight. We are so blessed with all of you. The emails and cards are so helpful, the prayers are so needed. Thank you, thank you.
I will let you know on the MRI.
Love, Di

Papa and I stayed with Bethany and Gideon for a little while yesterday. Bethany cried the whole time. Scott and Renee said she had been that way all day. Papa gave her tylenol with codeine and sat and caressed her face and I hugged and kissed her and whispered in her ear. Our poor little Baby Girl.
Renee says she's doing better today. Her sores all over look so painful.

A precious new friend wrote to Papa this morning to encourage him and what he wrote back was so sweet I hope he doesn't mind if I share a little of it with you all:

My heart changed forever when Bethany came into my life. I raised 2 boys to become 2 men, so a little girl was something I wasn't used to.
Football and wrestling was replaced with wearing silly hats and tea parties. While I raised my boys, I still had chores and had to earn a living. Being a Papa meant every second with her was imagination time, and adventures. And still, every second with her, I try to create a place where she can go and at least in her mind, be whole and play again. It's broken my heart to see my little play friend gradually lose her sight, and then to see her lose everything she knew as life. I was the one to teach her about the Lord, and she memorized a lot of verses.
I remind her all the time about Jesus, and I know that she's content the most when I read my Bible to her.
She knows that someday there will be a day when there will be no more pain and suffering, no more tears, and I long for the day when she taps me on the shoulder and says "Papa I can see you, look at me I can play again! Let's go on an adventure here in Heaven!"
There are days when I can't pray any more. I don't know what to pray....
but that never changes what I believe.

Our hearts were very heavy after leaving their house last night. I don't know how Scott and Renee hold up so well day after day. God is certainly filling them with strength.

All my love,

Our little "toughie" has made it through Christmas and her 4th Birthday, and is now into the new year. What will this year bring???
On the other hand, I know it was so hard getting through all of this for all of us, especially her birthday.
Her Birthday went well, the kids had a house full.
I talked to Scott earlier in the day and he was having a hard time, he said we should be buying her a bike and he had wanted to buy her a drum set this year.
But like Papa told me, at least she's here, the Dr.'s didn't expect her to be.
More kisses for Grammy!!
Thank you all that sent her Birthday wishes on her guestbook. They were so precious and so fun to read. I'm trying to sound upbeat but my heart is hurting.
Papa and I are really struggling right now.
Those of you that are sending me the precious uplifting emails (you know who you are), thank you! I soak them up into my heart like a sponge. And to all that lift us up continually in prayer, thank you, and please keep up the good work. I still lean heavily on all of you.
I think Papa could use some uplifting emails too, if you'd like you can email to him at:
I love you all!
Love, Di


Happy Birthday
Princess Buttercup!

Papa Bear and Grammy

What a beautiful Sunrise this morning in Colorado!
How amazing to me, that so many people are in such agony in Asia and the world still goes on. You expect everything to stop. I look around me and think, "wow, life still goes on". It just never ceases to amaze me. Five months have gone by, to the day, that this happened to Bethany. Where did the summer go? Where did the fall go? And now Christmas is over and Bethany will be 4yrs old tomorrow Dec. 30th. So much has happened, so much has changed, life as I know it will never be the same. The only word I can come up with right now is "wow". My beautiful little girl lying in that bed all swollen with bed sores all over.
With no notice everyone's lives were changed in Asia, with no notice Bethany's life was changed along with my own and everyone else's that knows her and everyone else's that has just recently come to know her.
Again, "wow". What an unbelievable 5 months.
Love, Di

I had the pleasure of staying with my Princess for a little alone time Sunday while Mommy and Memere went shopping and Daddy and Papa went hunting with Great Uncle Davey. I talked to her and sang to her (Shush, she likes my singing). I may not sing like Papa or Memere or her Mama but before all this happened I would sing and she would tell me I sing pretty, so there. :^) She was wide awake and I tried so hard to get her to smile. I keep thinking, if she can move her mouth to cry, why can't she move her mouth to smile? I used to be able to always make her laugh, the littlest things would crack her up (and it wasn't my singing). I didn't get any response out of her. Maybe one of these days. I know I'm not going to give up. Besides, maybe she's smiling on the inside.
She has new photos on her photo page. The one is so cute with her and Gideon in their matching pajama's.
Mama even put make-up on her, she looked so pretty.
Well, I guess that's about all for now. I'll be back soon.
Love, Di


Good Morning and Merry Christmas!
Wow, what a weekend so far. Yesterday Nick Quintana and the fire department came to Bethany's house with Santa in tow behind an old fashion fire truck in a sleigh! I told Renee and Scott to have Bethany ready and out on the porch at 1:00. I called Memere and she and Pepere and Bethany's Great Grandparents came over too.
Santa brought gifts for Bethany. Then they had a couple more houses to visit.
My heart goes out to Nick and Mike with the Arvada FD. (we're sorry Chuck wasn't there) These guys are the same ones that did her BBQ benefit last June. I'm glad they knew Bethany when she was better. I know it must be hard for them to see her like this. You can see pictures of it on my brother's web site:
Scroll down towards the bottom. Charlie has been so sweet to keep all my updates on his page also.
Thanks Chaz. A big sloppy kiss to you!

Bethany held up well last night at our house even with all the commotion and laughing and such. I think she liked being back at Papa and Grammy's. She seemed very content like she always was. Papa took her to her play room and held her and talked to her. She cried as he described where she was, I think it hurts her that she can't play any more. For those of you that don't know, Papa has her room painted and decorated so beautifully just for her. She loved her room here. When he was decorating it he told her about it on the phone and she said "just for me?". And the first time she came over after it was done the first thing she said when she came through the door was "Papa, let's go see my room!".

It has been a good Christmas but with so much hurt in our hearts. Papa and I were looking through pictures and came across last year's Christmas. Many tears. But we still have our little Princess.
All my love for now.
Love, Di

Merry Christmas Everyone!
Bethany's doing O.K., she's still a little out of it from her seizures last weekend, they always seem to take it out of her. The Dr. did some more blood work this week, they're adjusting her meds again. Gideon's eating and growing like crazy. We have a very busy Christmas planned. We're going to Scott and Renee's Christmas Eve morning for breakfast, then we'll have Christmas Eve night at our house and then Christmas with our Chad Christmas morning and Christmas day with Kerry's mom. Chad got in Wed. morning safe and sound. He's getting transferred to Buckley AFB! He starts there Dec.30th. We're all very happy to have him close to home. Bethany's crazy about her Uncle Chad.
I hope you all have a very Merry Christmas!
I will post pictures on Monday of the Princess and her little brother!
Love, Di

Good Morning,
Kind of a scary weekend. Papa was babysitting Saturday morning so Renee could shop and Scott was working. He called me and said something's wrong with Bethany, I think she's having seizures again. I called Pat, Papa and I didn't want to ruin Renee's day out or scare her, Pat and I talked about it and then she and Renee went back to the house. Renee talked to the Dr. and they think the diuretic may be flushing her meds through her body too fast and she doesn't absorb all of it. They're going to do some blood work this week to check. I guess she did better yesterday. Daddy was home alone with her and her trach clogged up. He called Renee but by the time she got home he had it cleared up. I haven't talked to him but I bet it scared the bejubbies out of him. These are good things for him to experience, first of all so he can see what Renee has to deal with all day alone and second of all to see that he can do it.
Papa and I got to babysit Saturday night! Yeah! Gideon slept most of the time, Papa sat and sang Christmas songs to Bethany and I kind of helped by doing some dishes and stuff. We all have our gifts to offer I guess.
Papa is so patient to sit and read and sing, Pat is so helpful with getting Bethany around and helping Renee with her, I guess my gift is helping with cleaning. The amazing thing is though that anyone of us can do any of the care that Bethany needs so Mom and Dad can get out and be comfortable with us being there.
Well, I will keep you posted. Have a good day!
Love, Di


Well, the tree is up, the house is decorated, the presents are wrapped. It looks like Christmas, it smells like Christmas, it even sounds like Christmas. Why doesn't my heart feel like Christmas? I've come to realize nothing will be the same any more. I choose to go on but nothing feels right yet. I try to keep a "stiff upper lip", I try to keep a smile on my face, I try to act like I'm strong. Sometimes I feel truly strong, sometimes it's just an act. I really try around Papa because he's hurting so much. Our first Christmas like this. Will it get easier? I know in my heart it will, I know from past experiences like the first one after my Mom died. I almost don't want it to get easier, I feel like that would be almost like forgetting my pain for the little girl I love so much. She's still here but she's not. If only we could turn back time, if only this nasty disease would have not happened to her. Although, then so many would have never seen God through this little girls eyes, then so many would have missed the blessing of meeting her. So I know there's a reason, I am even blessed to see so much good come from this. There are still some out there that haven't surrendered their hearts to God and God is calling you. So my precious Princess's journey is not in vain. What an honor that Bethany has been chosen to go through this for so many lost souls that need Christ in their lives. Some what like a Babe that came to this earth about 2000 years ago. Although Bethany can't save you, she can soften your hearts to hear God's voice. I know this because I've received e-mails from some that have surrendered.
Please listen to you hearts, hear His voice.
Love, Di

Bethany seems to be feeling a little better. She had blood work done today, her potassium level and sodium levels are low and she's anemic. Her Dr. called in another prescription for the potassium and is thinking about what he wants to do for her iron. He told Renee to give her a teaspoon of salt 3 times a day for her sodium level.
Renee is still having a lot of trouble with her gall bladder at night. They still want to wait about 3 months before doing surgery. If one of the kids don't wake her up at night her gall bladder does. She's still hanging in there and still keeps a smile on her face.
Gideon is doing great, he's so handsome.
A gal that Kerry works with gave Kerry money to give to the kids to go out one night. We're holding it ransom, we said we'll give it to them when we get to stay with the pumpkins. I told Renee, no rush, but no moulah til we get the babies!
I'm so thankful for the money that's been donated to the Bethany fund! I'm spending hundreds at the pharmacy for her.
Well, I think that's about it for now.
Take Care and Good Night.
Love, Di

12-13-04 #2
I stopped by to see my babes tonight and take some meds to Renee for Bethany. Bethany was crying and crying. I asked Renee what was wrong and she wasn't sure but she thinks it's her stomach hurting. She's been crying a lot the last few days. Renee gave her some pain meds to try to help her. I tried to comfort her, I talked to her, I kissed and loved on her but she seemed so uncomfortable. It seemed the more I tried the more upset she got. She has to be frustrated to not be able to tell us what's wrong. Bless her little heart! She's still so very swollen as you can see in her new pic's, she doesn't look the same from just a few months ago when she was still in the hospital. She weighs 59lbs now. I don't know how Pat lifts her, I can hardly budge her. They up-d her diuretic's again today, hopefully that will help.
Grammy's heart's sad tonight, I was just so happy earlier. Up and down, up and down. I almost didn't write tonight but this is all part of the whole picture, all part of all the emotions. Up and down, up and down.
Lift my Princess up in prayer tonight for comfort please.
Thanks. Love, Di


Hi there,
Well Bethany got to go ice skating Saturday with the DU hockey team! There are more pictures on her photo page. Renee and Pat even skated!! Gabe Gothier, is a 2nd cousin of Renee's Dad Dave. He and another player took her out onto the ice and went around the rink a couple of times. Memere and I stood on the side and tears ran down our cheeks, how precious it was. Gabe even took Gideon out for a spin! What a brave guy. The whole team seemed like a bunch of nice guys to do this.
Bethany's stomach is bleeding, Renee and Pat took her to the Dr. today to have it checked out. More meds. I'm sure it's all the different meds she's on, her poor tummy.
Mom and Gideon are doing well, nothing seems to slow Renee down, she doesn't want to miss out on anything with Bethany, I'm so proud of her.
You all have a good day.
Love, Di

Good Morning!
Bethany's having a great week! Renee and Pat took her to PSL yesterday for a Christmas party. Pat helped Bethany pick out presents for everyone. Bethany and Gideon got to see Santa and Mrs. Claus. I'm so thankful that Pat helps Renee do these things with Bethany so Scott doesn't have to take off work and Renee and Bethany still get to participate in all of these fun things. It's so much work and so nerve racking to take Bethany out. Scott got a taste of it the other night for the concert. I know how nervous I felt after they got to the concert and I didn't have to do any of the work. Tomorrow they get to go to an ice skating party with "make-a-wish". I can't believe Renee has the energy to do all of this.
Scott was looking for a second job but then went in and talked with the owner of his company and explained his out going income is less than his in coming so Dennis is letting him work over time so now he doesn't have to get a second job.
Yeah Dennis!
Bethany sat up again for the physical therapist and held her head up on her own! She is progressing well.
What a wonderful Christmas this is turning out to be. I wasn't really looking forward to it at first, Kerry didn't even want to decorate but I made him. Now I am taking my eyes off of my hurt and focusing on the good things that are happening. So many good people, so many good things to be excited for.
I love you all!!
Love, Di

What a wonderful night we had last night. NCAR, where Papa works, did a benefit concert for Bethany. They raised almost $2400.00!!!! A very precious couple, they go by the name Acoustic Eidolon, played. They were awesome, their music is so peaceful.
You can read more about them on their web page

Scott, Renee, Bethany and Gideon came, what a treat! They didn't get to stay long because Bethany seemed uncomfortable. Scott and Renee felt bad that they had to leave so soon and wanted Kerry and I to let everyone there know how much they appreciated it. Scott is so very shy and gets so uncomfortable in those situations, I hope everyone there understands that. I was holding Gideon and he made one little peep and his Daddy ran over and said "oh, that means he wants his daddy" and took him from me. BRAT!
I want to thank everyone who participated in doing this concert, all the hard work that went into it! What a success!!! I finally was able to meet a couple of people that have been such great supporters over the net. I feel so close to them. It was fun to meet people that Kerry works with and see the love pour out from them for our little girl. Wow, how amazing people are and how caring. I am so moved by it all.,
I was emotional all night last night.
People at NCAR had already raised probably over a couple of thousand even before this concert.
Thank you everyone at NCAR for your support and love for Bethany and wrapping us all in your hearts.
You are all such a blessing.
Love, Di


Good Morning!
Mom and Gideon came home yesterday. They put Gideon in Bethany's arms and her eyes opened wide and her breathing changed, we know she was aware of what was happening. There are some pictures posted on her photo page and there's more to come. Mom is exhausted, Gideon woke and then Bethany and then Gideon and then Bethany, all night. Daddy's home today so Mama can get some rest. Scott asked if he could take Gideon fishing, Mom didn't think so yet . Scott and Renee are just beaming, it's so good to see.
Gideon means "A great warrior" Michael means "God like". So a good strong name for a strong boy. He lifts his head already off your shoulder when you burp him.
Bethany lifted her leg last Friday for the physical therapist and moved it yesterday for Papa!
This was a good weekend.
Love, Di

Gideon's Here!!!
He arrived today at 2:36pm. 8lbs 9oz 20 and 3/4in long! He asked for a steak! Mom's water broke at 5:00am and she did awesome, she only pushed for about 25 minutes. His little face is a little bruised from being so big. They said if he were any bigger they would have had to have done a C-section. But all is well, he and mom are doing excellent! We were standing outside the door the whole time and we could still here Renee still giggling every once in a while. She loved the drugs. She laughed and giggled all day. Gideon, of course is the most beautiful baby in the world, just like his big sister. Papa spent the day with Bethany and took such wonderful care of her.
Today was a good day.
Love, Di

12-02-04 #2
Her appt. went well. They call the sores on her G tube, granulomas, they said they really weren't too bad. So they put some medication on them and Renee will continue it for I think she said 10 days. Now if we could just convince Mr. Gideon to come into the world.
Thanks everyone!
Love, Di

Bethany's area around her G-tube looks infected. Renee is going to call the Dr. this morning and ask what to do. It still is a rollercoaster isn't it? One day, one good moment then all of the sudden another concern. When I talked with Renee this morning she said Bethany seemed sad and upset so Renee was curled up around her in her bed trying to comfort her. Oh this Mama's heart. Oh this Grammy's heart.
Love, Di

YEAH! The physical therapist was over to work with Bethany and she actually had Bethany sitting up by herself for a few seconds! She told Renee she's seen so much improvement since she's been working with her. Renee needed this today, I talked with her earlier and she was kind of down. She's very uncomfortable and her gall bladder is causing her a lot of pain. She called the Dr. and they just pretty much tell her to hang in there and take her pain pills. She explained that she can't always take them because she has a special needs child at home and the pills put her to sleep and make her drowsy. Bless her heart. I offered to bring some soup or something over for lunch because she hasn't been able to eat much but she just says no, I'm O.K.. So please pray for Renee, Bethany and Mr. Gideon's health. They all really need it.
Thanks. Love, Di

Good Morning Family and Friends,
Princess Bethany is hanging in there. Scott and Renee had another emergency trach change Sunday morning. Renee talked with a nurse at the hospital and she had Renee change a med that was drying her out too much. Now Bethany's "juicy" but not choking. I am still amazed at these young parents. They are trying desperately to be a normal family. It's hard to not be over there to help them all of the time but they have truly proven they can handle things together. This all still feels so new to all of us. How much to do, how little to do for them. What is my part as a grandparent because we know everything? Right? I wish. We all want our time with Bethany and we all want to help and be needed but we need the wisdom and the unselfishness of when to hold back. It's nice that we're all so close that with just a phone call we can be there with in minutes. This little girl has so much love pouring out from all of us. There isn't anything one of us wouldn't do for her.
Michel (pronounced Michelle) the respiratory nurse is still volunteering her time and comes over after she gets off work almost every night to help Renee with Bethany's trach. What a special woman to do this. I know it gives Renee comfort to have her close by too.
Renee is very uncomfortable, she's ready to get Mr. Gideon out, but Mr. Gideon kind of likes it in there. Scott and Renee have decided that they want just the two of them in the room when he's born. They allowed both of us Grandma's in last time with Bethany. That was such an honor. But I totally respect their wishes to be alone this time.
Well I will keep you all posted. Have a good day and please keep up the prayers!
Love, Di

We had an O.K. Thanksgiving. We pulled Bethany's chair up to the table so she could be with us. She's doing allright, I guess. Sat. morning her trach was clogged and Scott and Renee had to change it and when Scott pulled out her trach she coughed out some nasty stuff that was clogging it. It sounds like it was pretty scary for the kids, when I talked to Renee she still sounded pretty shook up. I told them I was proud of them that they handled it well together. They make a good team. They both still continue to amaze me with their great outlook and how they're both so willing to take things on.
Tonight (Sat.) at about 5:30, we went to the hospital, we thought it was time for our Gideon to arrive. Papa gets Bethany duty so he went to the kid's house so they could go. It was a false alarm or as the kids say a trial run. Papa didn't mind,it meant more Bethany time for him.
So I'll continue to keep you all posted!
Love, Di

Hi everyone,
I hope you all have a good Thanksgiving.
A precious friend that I work with loaned me a book called "Laying down my Isaac" by Carol Kent. I've quoted a few things from this book lately but I wanted to share with you how much it has helped Kerry and I get through all of this. Kerry and I were talking last night about it and I feel that I am finally at a point of acceptance with everything. As we look at her (Bethany)and wonder why God brought her to this point and now she's like kind of stuck here. It doesn't take away the pain but I feel that I'm O.K. with where things are and I can accept it and wait on the Lord to show me what He wants from me. What ever it is and where ever He takes me I will follow.
Bethany has a new sore on her bottom that has us a little concerned. They're watching it and treating it.
Renee feels very pregnant but nothing stirring inside.
We're all going over there tomorrow for Thanksgiving. It will be nice to be together giving thanks.
Have a wonderful weekend and kiss those babies for me.
Love, Di

Another quiet weekend. Papa spent some time with her yesterday again so mama could go shopping and daddy could do things around the house. We don't see all the things that Pat and Renee see with her moving and responding, I guess she's too tired when we get there. But I'm glad they at least are seeing it. I went to bed last night feeling so good and so peaceful and woke up this morning feeling a little blue. You can never guess what you'll feel like one day to another. One moment to another.
I do know that I am so blessed, so very blessed. I am surrounded at work by people that love me and support me, I have a wonderful church that I can go to and worship and feel uplifted and encouraged. My new found friends that give endless strength through the internet. I have an incredible family that checks on me periodically to make sure I'm O.K.. I have my precious sons, a daughter-in-law that gave birth to Bethany and is now about to give birth to my grandson and a daughter-in-law in waiting soon to enter the family. Most of all I have my precious husband that when the day is done and the sun goes down I can come to him and we can hold each other. "To have and to hold", "For better or for worse", "In good times and in bad" "In sickness and in health". Who's sickness, and who's health? It doesn't just mean one of us we've found out.
I've heard so many talk about how something like this can pull a couple apart, how very sad. I am so happy that Kerry and I have always put so much emphasis on our marriage while the kids were growing up so that now that we are empty nesters we enjoy each other and we have each other to hold and support and comfort. We still make each other laugh!Kerry is my everything and even though my heart feels so broken for my Bethany I still have my big ol' bear to ease my pain.
God is so good through it all. He continually reminds me that He loves me and that He is in control and I don't have to worry. I just have to be quiet and trust. The amazing thing is that he loves Princess Bethany even more than I do!
She's all yours Lord, thank you for entrusting her to us while she's here. What a blessing!!!
So much to be thankful for during this Thanksgiving season.
Love, Di

Good Morning one and all, Bethany had a Dr.'s appt. yesterday to check the skin around her G tube because it's been red. He said it's O.K., to just keep some ointment on it. Renee has her OB appt. this afternoon to check on Mr.Gideon, Scott is going with her. We're down to 3 weeks now! Scott is so very excited about having a son. When we were still in the hospital with Bethany and they had found out it was a boy I remember all of us standing around Bethany's bed and Scott told Renee "sit down carrier of my son". It was so funny! Scott also put the baby swing down stairs by his chair so they can play video games together. Last weekend Papa and I went to the mall to the Build-a-Bear store and bought a pony for Gideon and named it Buttercup. We did this for Bethany before she was born, we bought a Bunny and named it Tissue because Scott's favorite stuffed toy was a bunny when he was little and his Uncle Bruce always called Scott "Tissue". We named the pony "Buttercup" because Papa always calls Bethany "Princess Buttercup".
It's strange because when we were at the mall we walked and talked and even laughed but on the inside we hurt so bad. I told Kerry just think of how many people have been in our shoes before us walking around and hurting so bad and we didn't even know it. Know one knew that we were smiling on the outside and crying on the inside. All the memories of how things were. All the precious little kids running and laughing and all the parents possibly taking it for granted that next Christmas they'll be doing the same thing. All the plans you make for the future with out knowing your life could change in an instant.
I know for a fact I will never take things for granted again. I work for a pediatric Dentist and this week while a mom had her daughter in our office the mom received a phone call that her husband had been killed in a roll over accident. Wow, just like that their lives are changed.
This year as I shop I'm going to be more sensitive to others, no matter how they treat me because who knows what is going on in their lives. It's hard to get in the "Christmas spirit" but we owe it to Bethany and Gideon to keep going, to hold on. Thanks as always for listening. I know years down the road when I look back and read my entries I will appreciate all of you as much as I do now.
I love you, Di

Well there's really nothing to report. All is about the same. Renee has another Dr.'s appt. Fri. to see how Gideon's coming along. Renee's doing well, hanging in there, ready to have him. We can't wait to hold him, kiss him, squeeze him.
So I guess that's all for now.
Love, Di

Hello out there! We've had a good weekend! Scott and Renee really enjoyed their night out Fri. They said they both still woke up a few times during the night and then remembered it's O.K. to sleep. We met an amazing Lady Sat. night, Terry. She had a precious little girl that had C.P. and passed to be with The Lord recently and so she had some items that we could use for Bethany. Many she gave us and some she sold to us at a wonderful price. Bethany's bed from the garage sale wasn't working as well as we would have liked and some very special people bought a much better bed from Terry and gave it to Bethany. What a blessing! Papa and I bought her a beautiful pink netting for over her bed today and now she looks like the Princess she is! Mommy and Daddy have Gideon's crib up that some other very special people from NCAR (papa's work) gave them because their crib was missing pieces. More blessings!! Everyone is so precious to reach out and help this little girl and her mommy and daddy. It is so moving and so touching! I know I keep saying it but I mean it, we are getting through this because of all of you!
Thank you!
Love, Di

Good Morning! Therapy went well yesterday for Bethany. We're excited about it. It will be a slow process but at least it's happening. She had a Dr.'s appt. also because she's had a bad sore on her neck from her trach chain but it's looking better! Renee also had a check up and Gideon is growing well, sounds like he's going to be a big boy, maybe 8-10lbs.! Renee's not looking forward to the delivery because of it. She told me yesterday "this boy's not coming out of any hole of mine!" :)
Renee's blood pressure is good and all seems well. Some wonderful people that Kerry works with have given the kids a dinner certificate to go with our hotel night out Fri. night. Sounds like they will have a nice night. It's such a great feeling to be sending good news everyday. We still cry and hurt and miss our girl the way she was but we are so thankful to see her doing well and are willing to deal with what God's gives us and grow through it. We still get our strength through all of your emails and notes on her guestbook.
Thank you, I love you all.
Love, Di

All is going well. A friend of the Chapdelaine's, Michelle, is a R.T. and she is coming over each day to help Renee with Bethany. She has been a huge help already. The new home care will start sending over more therapists this Wed.. We have a hospital bed and it's wonderful! Renee's nephew bought it at a garage sale. Yeah Shawn! Kerry and I are giving the kids a night out Fri. night. We'll stay with the princess and we're sending them to a hotel downtown for a good night's sleep. Praise God all is well! Love, Di

Good Morning!
We've had a good weekend. Renee, Memere and I went to a Christmas craft sale yesterday at The Mart. We didn't buy much but had a very nice time out together. Scott and Renee's brother Brian, worked on their yard all day and Papa had the honors of babysitting the Princess. He sat by her side for about 7 hours. He said the time goes by so fast. He sings to her, he dances with her, he reads story after story. Renee said Bethany always sleeps well after the Papa has been there. Uncle Chad called while he was there and Papa put the phone up to her ear so he could talk to her and her eyes opened so wide and moved back and forth like she was so excited to hear his voice. I want to share with you what Renee wrote in the guestbook yesterday, it's so sweet, get your tissues handy:
I want to continue to thank every one for their support and prayers . The lives that this little Princess has touched is just so encouraging . They say that the average person can influence up to 1000 people a day I am almost positive that Bethany has never been average she is far above average . I know that my life would not be as happy as it is now if she weren't in it. Every day I pray that God just lets her get a little stronger and I feel like every day He answers my prayer . Bethany is going to be starting her physical therapy next week and I have a feeling that in a matter of time she is going to be up trying to help with her her little brother when he's upset. I know that she loved him so much before all this happened she would sit on my lap lift my shirt off of my belly and talk to him " Gideon what are you doing in there?" "Gideon do you want to get zerberts?" (that is what we call it when you blow on someones stomach) and she would blow on my belly and giggle so hard that she would almost fall off of my lap. I know she will do everything in her power to keep her little brother happy that is the kind of angel she is if she ever heard a little baby cry she was right there with a Shh it's okay and a kiss to blow them she hated when little kids were upset and now it seems like she's the one who needs the Shh it's okay and a kiss blown to her. I know that eventually she will get back to a good point and be able to comfort others like she always did with her compassionate little heart until then I will be there for her to tell her it's okay and do what ever I can for her.

What an awesome positive attitude! Don't you agree?
Good Day all, from our hearts to yours,
Love, Di

We found out that we're not going to get to keep the hospital bed. So we are now in the market for one. I have no idea yet what that cost will be, I'll start making calls tomorrow. If anyone knows any place that might have better prices than others please do tell. Having this kind of bed is so important because it will sit her up or lay her back comfortably. Also it's up higher which helps the preggo Mama and the aging Grandmama's when working with her. Bethany had a Dr.'s appt today with her neurosurgeon and all is well with her incisions from her surgeries. Papa went to see her tonight and she was all tuckered out and sound asleep from her outing today.
I'll talk to you all soon.
Love, Di

Hi There,
The new homecare nurse came out today and met Bethany and Mommy and Daddy. They'll have P.T. come out tomorrow or Friday to assess for therapy. There will be extra costs going through this company but at least she'll be getting therapy. The meds will probably run about $300.00 or so a month (just an estimate right now) plus diapers and a few other things that we're slowly figuring out. I've told the kids to not worry about the money, it will work out some way. God hasn't let us down yet nor will He ever! Also we're hoping to be able to keep the hospital bed that hospice brought for her, we're not sure yet on how that's going to unfold. Hopefully medicaid will be active soon, that would be awesome! Bethany's still swollen but not as bad as she was. She has good days and not as good of days but for the most part she's still hanging in there bless her heart. Renee is also still hanging in there with her pregnancy bless her heart too. Again thank you all for your continued support and prayers.
Bless all your hearts too!!!
Love, Di


Good Monday Morning,
We had a nice time at Scott and Renee's last night. They Had Memere and Pepere and Papa and I over for a little Halloween get together. Bethany was a leopard, Scott a mean old man (but he looked like his uncle Rob), Memere a witch, Pepere a biker, Papa the Brawny Man and I went as myself, an Angel:). We talked about switching from hospice to a program called children's pharmaceutical for home care for Bethany. This way they'll have the pediatric nurses and supplies. Also they'll have physical therapy come out too. Mama feels that Bethany is trying very hard to communicate so we need to try to encourage that. We have been getting spam on her guestbook so now every entry has to be approved before going on so please don't let this discourage you from making entries on her guestbook.
Have a good day!
Love, Di

Good-morning. We didn't get much new info yesterday but we're checking into other options for Bethany's home care. Dr. Smith put her on a new med for the water gain so here's hoping. I guess Bethany enjoyed her outing but came home exhausted along with Mommy and Memere. It's so much work to move her she's so heavy. I'm so thankful for Pat to be able to help Renee with all of this. It saves Scott from losing hours at work. My girlfriend loaned me a book the other day about a family in crisis and it's amazing to read feelings that describe how I feel. The author talks about choosing life or curling up and dying emotionally. And the scary truth is that if you choose life it will never match the kind of life that we had perfectly foreseen in the past. I have often said that this is not how it was supposed to be and my special girlfriend reminded me that yes it was, it is as God planned it. Like my Scott said we are honored to be found faithful and strong enough to endure this. But I assure you that doesn't take away the pain but it keeps us going. Have a nice day my friends and family. Love, Di

Bethany has a Dr. appt today to check her swelling. They are also going to discuss other options besides hospice, because with hospice Bethany's not getting any therapy and she obviously is still fighting so as always we need to fight with her. I'm sure you all have heard the story of "footprints in the sand" where Christ carries us when we're too weak to walk. Well the other night as I was reading my emails and notes on Bethany's guestbook I was imagining walking and tripping and one of you came up beside me and put your arm around me and then another came up on the other side and the two supported me and then when I get too weak Christ sweeps me up in His arms and and holds me close and cradles me and whispers in my ear it's O.K. it's O.K.. I'm am continually blessed at all of you, most whom I've never met. People from all walks of life all faiths there supporting my family and myself. I am so thankful. When I return an email with a quick thank you I hope you all know that it is from my heart. God fills me each day with all of your strength that you all pour out. So again,
Thank you.
Love, Di

We got her test results back and they said it's a little abnormal but nothing to worry about. They're going to change one of her meds and see if that helps. So this is good news. Whew.
Love, Di

Miss Bethany doesn't look much like herself right now, she is very swollen with water retention. I asked Renee to ask the Dr. if it could be her kidneys and she did. A nurse came in today to draw some blood and check things out. She's had trouble in the past with one of her renal arteries and they've ballooned it a couple of times and they had talked about her needing major surgery for her kidneys but didn't really want to put her through another surgery. Renee is getting exhausted, she's getting sick and not sleeping well. Her mom comes over to help and Papa went over this afternoon so she could get a break. She went out shopping with her mom for a little while. I told her she needed to sleep and she agreed but she can't resist time out of the house either. Please keep Renee and her little unborn babe in your prayers too right now. I'll let you know the results of the blood tests as soon as I know.
Love, Di

I want to share with all of you what Scott wrote in Bethany's guestbook in case some of you don't get to that page very often:

Five years ago, I didn't watch the news, didn't care about politics, and certainly never thought I'd have a child. Needless to say, my life has changed. For the better?...Absolutely! I praise God for finding me and my family strong enough and faithful enough to weather this tribulation, for what ever purpose it may serve.(Rom. 12:12-Rejoicing in hope, patient in tribulation, continuing instant in prayer.) For the past four years of my life I've been struggling to keep everything stitched together, and now I find the harder I try to control the situation, the less control I have. Bottom line, only God has complete control over anything. All I can do is pray, and standfast for the will of Christ. Gods time is not our time, nor is His will, life is a passing season, whether it be four years or one hundred years is in His hands. I miss my daughter, although she is still with us, in essence what we had and what we've got are not the same, the memories however are etched forever. For example: 5:15 AM every morning, I was woken by sound of a door slowly creeping open, followed by small unsure footsteps feeling their way over to our bed. then with the agility of a child with 20/20 vision, she was on the bed feeling for the reserved parking between Mom and Dad. Elbows and knees worked together to scale Mt. Dad, then once her spot was located,she would toss and turn to ensure the awareness that the Princess had arrived. She would place her feet firmly into my spine and then with the softest tone..."Daddy?..are you awake?" And still half asleep I responded, "Yes Baby." "Can I have some noo noo's and a drink to drink?" Every morning this was as predictable as the sunrise, and something I will remember forever. I thank everyone for their love and support, keep praying, and God's will be done. God Bless,
Scott :)

I am so proud of him and how he's stepped up to be such an awesome man!! So many have ridiculed him because of his looks (tattoos and previous piercing's) but he's a bigger man than anyone else I know besides his Dad who has obviously made an impact.
I am so blessed to have my 3 men, Kerry, Scott and Chad.
Love, Di

Thursday, 10-21-04
She seems to be having a good week. I'm not sure Mommy is though, when I talked with her this morning she had slept in Bethany's room on the hardwood floor because Bethany was coughing a lot. I bought Renee an air mattress today so she could at least have some cushioning. She amazes me, 7 1/2 months along now and sleeping on the floor to be by her baby. She's not the only one who amazes me. Kerry and I just celebrated our 27th glorious wedding anniversary and he still amazes me. He spent all day with Bethany today so Renee could have a break. I showed up about 4:30 and he was sitting in there talking to her. He said they had several stories, sang several songs and he read her many bible verses. This burly Bear has melted into a squishy soft Bear. He cries everyday for his Bethany. Before Bethany I had only seen him cry a handful of times. My oh my, the hearts this little one has touched and is still touching. Someone who had just met Kerry observed him and told him that she has the key to his heart and opens and closes it at her command. If that isn't the truth. Thank you Lord for my precious husband and his loving heart and please protect it and guard it and help it to keep going when it feels crushed. In Christ's name, Amen. Again, thank you all for your encouraging emails and notes in Bethany's guest book. It truly keeps us going. Love, Di

Sunday, October 17, 2004:
Miss Bethany is doing well. Her mama and memere took her out for a little while yesterday, they said she seemed to enjoy it. I arrived at their house soon after and she seemed wiped out but content. I went to the mall today, it was the first time since all of this happened. The last time I was there was when she had a seizure and Papa and I had to rush her to the ER at PSL. It was so hard to go there. I was shaking. I had talked to Chad (our youngest son in North Carolina, in the Air Force) on my way there and I was crying, he encouraged me. I went to the Clinique counter in Dillard's where Bethany had made some very special friends, every time we went there she had to stop to talk with Andrea, Emily and Jenny. Of course she would always get some goodies while we were there although, bless her heart, she never asked or expected, she was just happy to talk with them. The girls cried with me and hugged me and sweet Andrea was so encouraging to me. Oh how I miss those times. I know we still have her here to hug and kiss but I miss all the fun times! Like Chad told me, I need to concentrate on the good times and be thankful for them and I do but oh how I hurt!!!!! I am sobbing right now just trying to explain what I feel in my heart. I'm thankful that she's doing well but I want my happy, squealing, loving little girl back. She was always so willing to give hugs and kisses to everyone. Like Andrea told me today, she's still here to give us her love and she's still the giving little girl wanting to make us all happy. Oh little Bethany, it's time for you to be happy! It's time for you to be whole! Please little girl let go and go in peace!!! Grammy loves you so much!!!! I have to go now. Love, Di

Thursday, 10/14/2004:
Tonight our neighbor Mike and his youngest daughter, Seriah, stopped by to bring us cards that students from Lawrence elementary made for Bethany. He's a librarian there and shared with the students about Bethany. So many were touched that they wanted to do something for her so they raised over $100.00 and made the most beautiful cards! These are kids from kindergarten to 6th grade. Kerry and I sat on our living room floor with Mike and Seriah and went through each card. They were so touching and so moving! These kids poured their hearts out to our Bethany. They wrote poems and letters and one little guy even wrote a story about Princess Bethany and there were 2 knights, an evil one and a good one and they fought and the good one won and saved Bethany. This is a 3rd grader! The tears flowed and the smiles widened. Many pictures of themselves walking hand in hand with Bethany. How precious each card is. Mike suggested copying some and putting them on her web page but I felt that there was no way to determine which ones to put on there because each child that made a card or wrote a note did it from his or her heart and each one was just as pecial as the next. I want to thank Mike and Julie from Lawrence for opening up this opportunity to the kids and I want to especially thank each precious child that wrote a note or a card or drew a picture and all of the kids that donated and collected money for our Bethany. I wish she could come to the school and thank you herself but unfortunately she can't right now. Maybe someday. God Bless the precious children. They are so loving.
Love, Di
She's doing great! Renee and Scott are also doing great! You can tell that Scott is so very happy to have his family all home and together. Renee is doing fantastic by herself with Bethany. Hospice called and offered to send a volunteer over but at this time Renee feels she can handle it on her own. Scott helps her get Bethany situated in the morning and then comes home at lunch and then Renee's mom Pat, comes over in the afternoon. So I guess all is O.K. right now without more nursing help. I'm sure when the new baby is here and if Renee has surgery for her gall Bladder that then for sure she'll need more help.
I'm so happy that my little ones are all happy and content together at home. It makes a grammy's heart warm and fuzzy and I need warm fuzzies for this heart right now.
Love, Di

The Princess had a wonderful first day at home. All went well!!
There are some new pictures on her web page so check them out. I had Kerry put proof on there of me changing her trach, those of you that know me know that this was a big step for me.
There's also a picture of her with her friends from day surgery that she got to know so well when she went in every morning for her radiation for 5 1/2 weeks.
Keep up the prayers!!

Love, Di

She's home and doing great!! She seems really at peace and content. I'm so proud of Scott and Renee! They have been given so much to deal with and they are totally owning up to their responsibilities. Scott even made dinner for all of us last night to thank us for all we've done for them. For 24 and 22 years old they've been through so much. I'm receiving leads on pediatric nurses and I'll check into them. Hospice will only have someone out 3 times a week for an hour at a time, that isn't very much. We're still trying to figure things out and tying up loose ends. I'll will let you know needs as we come up with them. Thanks so much!!! I love you all!!
Love, Di

HOMECOMING DAY!!! All is in place and she had a good weekend so it should be a go. Her nurse told her this morining that she gets to go home and her heart rate went up a little.

I'll keep you posted!
Love, Di

I want to share with all of you about a wonderful unexpected gift. We called Coit cleaning services to come out and clean the furnace and vents in the kids house. They came out and gave an estimate and set up to come out Monday afternoon. Then when we found out that Bethany was coming home Monday morning I called and talked with Kimberly who turned me over to the manager Marty and she explained they were completely booked for Saturday. Soon Marty called back and said that a tech -(Rodney) would come in on his day off before he moves and clean the vents and furnace Sat. morning. Then Jake (another manager) called Sat. morning to let us know that they are donating the fees. Wow! How precious people are. Every week our neighbor Tammy comes over and mows our lawn, the dinners keep coming to us every night at the hospital. Everyone tells us it's nothing but what all of you don't realize is, is that's it's huge! When we are so mentally, physically and emotionally exhausted all of these gifts are so precious to us.

Now we have a new plea though. We NEED a home care nurse to help take care of Bethany. Like I said in my last email they're hard to come by for pediatrics. So I don't know how to go about it but if there's anyone out there please contact one of us.
Also if anyone needs their carpets, drapes or furnaces cleaned, please call Coit, 303-922-9212 and tell them it's in thanks for what they did for the Slaven's and bring it to Marty or Jake's attention.
God Bless all of you! I love you!
Love, Di

10 wks and 1 day. Wow can you believe it? My how our lives have changed. Well the plans are to send her home Monday with home hospice and hopefully also home care nursing. I guess there aren't many home care pediatric nurses in Colorado. So here's hoping and praying that someone will be available for our little girl. The medicaid has not been fully approved yet but the ins. Co. is not going to let her stay any longer. We are all happy she gets to come home but very nervous and scared.
Til next time my friends.
Love, Di

10-06-04 #2
I came home before Kerry tonight so Papa could have some alone time with his little princess which means I had some alone time at home which isn't always good for me because I can get pretty down. I started thinking and asking "Lord why are you taking this precious little girl away from us?" I have imagined for a long time about what kind of Grandma I wanted to be. I always loved my Grandma's and I know my children's Grandparents love them but I just knew I wanted more than just being there in the back ground. I knew I wanted to have a special relationship with my grandchildren, I wanted to offer a "storm house" when things were rough at home where they could come and know down deep that I'll back up mom and dad but some how make it better or help them understand that mom and dad do these things because they love them. I know I have this relationship with Bethany. She would get here and you could just feel her melt with comfort and peace. I feel like I was doing everything right with her. Ya know how with your own kids as they grow you always wish you could have do-overs with some situations? I know that 3 1/2 yrs isn't very long but up to this point I really feel like I was on the right track. And now, it's all coming to an end. Why? Why does it have to be this way? This was not in my dreams and plans of being a good Grammy. This is not how it's supposed to be. The love I feel for that little girl is immeasurable, it always has been. I have often said I can't even explain how I feel about her. It was almost like something magical every time she came over. I do look forward to my little Grandson but oh how I'll miss my Bethany. I can't wait to tell Gideon all about his big sister. Hopefully he'll get to find out for himself but who knows.
So once again I'm crying out my feelings to you all.
Please kiss kiss kiss those babies.
Love, Di

Good Morning, Not much to report. She's been pretty good the couple of days. Hospice will only send someone to the house 3 times a week for about an hour at a time so we have to check into other options. Probably just go with home nursing care but I guess there are not a lot of pediatric home care nurses. So that's where we're at for now.
Love, Di

We had another family conference with the Dr.'s this morning. Scott and Renee have decided they want Bethany home. So they will have home hospice care come in and help. We don't have all the details yet but hospice will come in and talk with us. If she takes a turn for the better then they will change it to just home care but this way if things get worse hospice will be there. Scott and Renee have also, much to their pain, decided on a DNR (do not recesitate)(sp?). The nurses and Dr.'s comment all the time on the support we give each other and the strength we have, Dave (Renee's dad) shared with them it's because we have the peace of knowing that when Bethany goes she will go to heaven to a perfect place with a perfect body and because we believe that Christ died on the cross for our sins and that He is the Son of God that one day we too will be in heaven for eternity with her. That's our peace people that's what we hold on to day and night and when our pain is more than we can bear.
So we still have no idea what's in-store but we know that Bethany will be happier at home in mommy and daddy's arms.
Love, Di

The rollercoaster goes on and on. Bad night last night, they had to "bag" her because her breathing was so bad and they had to do it again this morning. She also had another seizure this morning too. The Dr.'s are not optimistic right now. She's not going to get to come home for her visit tomorrow for Renee's baby shower. Wow what a turn around. Linda LeBrie and Nick, I'm trying so hard to not go way up or way down but I can't control it!!! I can't control anything right now!!! I can't even pray!!! I don't know what to pray!!! But I feel God's presence and I know He's holding me and loving me but more importantly I know He's holding Bethany and loving on her.
I can't see the letters anymore so I'll go now.
Love, Di

Well for a day that started out rough it ended up great! Bethany had a wonderful time at home. We were all so very nervous but she responded fantastic! She even lifted up her right arm about 3 times, ya know the side that she would probably never be able to use again because she had 3 strokes on her left side of her brain. She cried after she lifted it though, her little muscles aren't use to it bless her heart. The nurses said she had a good night sleep last night and her vital signs were perfect all night! I have to tell you how wonderful these nurses are at PSL!!! I am so thankful for them and their encouragement and patience with us.
Have a good day!
Love, Di

Miss Renee got to go to the ER this morning, more gall bladder problems. They are going to try to hold off on the surgery til after the baby but if this keeps up she'll have surgery soon. We almost had to postpone the home visit but instead it's just delayed a few hours so she should be leaving here in about an hour.
I will let you all know how it goes.
Love, Di

Not much to report. She's doing well. She's grinding her teeth really bad so the Dentist I work for came down and took an impression to make her a mouth guard. Hopefully that will help. They're sending her home for a little while tomorrow for a trial run.
Here's hoping!
Love, Di

Good Morning,(I guess) I don't sleep well at night, I toss and I turn and I dream and think about Bethany all night. Then when I finally do fall asleep it seems like just minutes and the alarm goes off and it's time to wake up. My first thoughts into my head are of Bethany and my heart sinks. I wish I didn't have to wake up, I even sometimes wish life wasn't still going on. (No I'm not suicidal). I wonder how much more, how much longer and what's next. I've had the pleasure of spending the last 2 days all day by myself with her while everyone gets the house ready and I have to tell you being there alone all day starts to get depressing. We've had a great time together, we listen to music, I give her massages and sponge baths but the phone calls have mostly stopped, the visitors have mostly stopped (this is not in anyway a guilt trip for anyone). Life has gone on for everyone, even us, (although this is mommy's life now) we're back to work, we still have to do our laundry, pay our bills, take care of the house. But for Bethany is this her life? Is there going to be much more for her good or bad? These are the things I dwell on as I look at her laying in that bed day in and day out. She is so beautiful. When her eyes are open with her long lashes I see Bethany, the Bethany of before all of this. Oh how I miss that Bethany. The one with the ornery laugh the one that would say "run" and it was just a faster walk leaning forward a little. The one that would kiss my hand when she was holding it while walking to the park. Oh Lord God our Saviour, how much more, how much longer? Love, Di

What a nice day I had with my princess today. I was able to spend all day with her by myself and then Papa was able to join us this afternoon. Renee and her mom were at the house working and getting it ready along with a few other of their relatives. My how much faster things go when it's not just Kerry and Scott by themselves! It is coming along so wonderfully! Bethany did well today, she behaved for the most part, just a few moments of heart rate raising. P.T. worked with her and had her sitting up. Papa and I washed her hair and she even got to go on a ride in her new wheelchair. All and all a good day, I'll take it!! Many more grammy kisses and lovin'! Can't get enough of those. That's it for tonight, good night and sleep tight.
Love, Di

So they're going to send her home for just a few hours Tuesday if all goes well for a trial run. Then again maybe on Sunday the 3rd for a few more hours and continue to do this a few times just to get Scott and Renee comfortable first with everything. People are asking what all do they need before she comes home and we're really not sure yet. The donations that are still coming in are such a blessing and so very needed with getting the house ready. It's coming along very nice. As I find out what they'll need for sure I'll let everyone know but please know that what has been given is going towards the house for Bethany to be as comfortable as possible. They've painted thru out and the hardwood floor is in and mostly done. We still want to pull up the yucky carpet in the basement because it smells bad from the cats and then lay down something down there. The bedrooms already have hardwood so this weekend they're going to buff them out and re-varnish them. It will be nice to hardwood because they're sending home a wheelchair with Bethany. So we'll see how it all unfolds.
Love, Di

The Dr. finally came in tonight and talked with us. It's not encouraging but it's not hopeless. He feels that she has had another stroke, he's not certain about the seizures but it's possible. He feels that she would do better with home care and home therapy and that she's not ready for intensive therapy at Children's. She doesn't respond to comands but she seems to be aware of us with her because last night when we gave her kisses good night she cried so Renee stayed with her til she fell asleep and then one of her favorite nurses gave her a massage. The big question is when is it time to go home? The insurance company wants her out but the Dr.'s are not sure she's ready for that and neither are we. There's still a lot to do to the house to get ready. Dr. Miller feels short home visits would be best but we're not sure what the ins. co. will agree to. Some of Pat and Dave's relatives are going to start coming to the house at night and this weekend to help Scott and Kerry get ready so hopefully things will get pretty close this weekend. The nurses are prepping Renee for home care although Renee is amazing at doing everything now. I guess it's up to Bethany and what she'll pull. It seems like every week there's been somrthing new that makes the Dr.'s and nurses fly into her room. So I guess we'll see with in the next week or so. Til next time, good night.
Love, Di

Tonight we had fun with the Princess. She loves to have Grammy put make-up on her so we put some lip stick and blush and a little eye shadow on her. Doesn't she look beautiful!

Love, Di

Well no news is good news right?? We still haven't heard the results of the EEG. I know this is every day life for these Dr.'s but to us it's not. I wish they would be sensitive to that. It's so frustrating that we sit here on pins and needles while they come and go at their convenience. She had a good day yesterday and the interesting thing is that last night she started acting like she was going to have another seizure and the nurse tried tylenol first at the very beginning of it and she settled down with out being drugged up. I guess she did the same thing this morning at about 5:30am and again the nurse gave her tylenol and again she settled down. So maybe they weren't seizures, maybe it was pain that made her get so worked up. Who knows, oh the Dr. maybe, I wish he'd share it with us! I wish I knew what Bethany was thinking and how much she's aware of what's going on around her. Here she is blind and can't move, can't talk and the only way we know something is wrong is by her vital signs. I wonder if sometimes she's screaming on the inside trying to tell us what to do. I would love to talk with someone that has had a stroke and been in a similar situation to find out. No news on a decision to move to Children's yet either. Waiting...waiting...waiting...
Well my beloved friends as usual I'll keep you posted.
Love, Di

They did an EEG this morning to check to see if there's seizure activity. We haven't heard back on the results yet. I guess things are still on to go to Children's tomorrow to start rehab. I'm surprised they still want to move her because she may have had another seizure tonight. She begins shaking and her face turns red and kind of swells. She feels hot but she's not running a fever and she gets very stiff. Her heart rate just sails up to the 180's. So I guess we'll see. Love, Di

9-18-04 #2
It's our worst's another stroke...right side... not as big as the left but possibly motor skills. I can't type right now.
And now she's had another seizure.
Love, Di

Last night I had a dream about Bethany being sick...then I woke up and thought WHEW it was just a dream....then I realized it's not just a dream. No news yet on the MRI.
Love, Di

She hasn't been very responsive again today and her left side is stiffer than it usually is so they did an MRI, one of her Dr.'s is concerned that she possibly had another stroke. We don't have the results yet and may not get them til tomorrow. Please pray that all is well.
Love, Di

A very dear friend of mine sent this to me today and I wanted to share it with all of you. She's explaining about a book that she read and how this part applied to us: The group of believers that surrounded this family where outstanding in their intercessory prayers and in meeting the needs of the family. One chapter tells a story of how they united and dubbed themselves the "Stretcher Bearers." Stretcher Bearers are friends who see a need, and they decide to take action. It's a way for us to nurture the body of Christ. It's described in the bible in Luke 5:17-26 where some men are carrying a paraplegic on a stretcher. They cannot find a way to get into the house to see Jesus because of the crowds so they go up on the roof and lower him in front of Jesus. Jesus then heals the man, you know the rest of the story. The interesting part of this story is that a stretcher cannot be carried alone. It takes at least two people to carry the injured. I love the picture of that. We can share in each others burdens by becoming "Stretcher Bearers." It seems to me that you are surrounded by some pretty great "Stretcher Bearers." You are so precious to me. This spiritual journey that you are on is just like an "Isaac experience." You are laying down Bethany, Scott and Renee. You have let go of your right to a happy ending. Instead you are honoring God even when all seems uncertain. I think you are discovering a hidden power in heart sacrifices. I thank you again for helping me to see Him in a most powerful way. You all are my stretcher bearers. Everyday, all the kind words and the encouragement you give me let alone the prayers that you're lifting up for Bethany and all of us. Thank you for strengthening me everyday.
Love, Di

9-15-04 (#2)
So I drive up to the hospital tonight to find my little Princess in a wagon hanging out in front of the hospital, going on an adventure with her Mommy and Memere and Pepere (french for Grandma and Grandpa)and Papa but with out the Grammy (or the Daddy).
What a precious sight to see! She really seemed to be enjoying herself. (Let alone how much the grown-up's were enjoying it) The Doc's say that if all goes well they'll send her to children's next Mon. to start therapy. This is where you all come in! As I said earlier today, the prayers are working so keep them up that she will respond well to therapy. We'll talk again tomorrow I'm sure.
Love, Di

Wow, how encouraging you all are. The precious email's and messages on Bethany's message board are so moving, touching and encouraging. Last night Bethany was a little more interactive and awake and content. It's like all your prayers are strengthening her as well as us!! She went on 2 wagon rides yesterday and really seemed to enjoy them. I think she's trying to tell us she's still fighting and not to give up! I can't believe all the lives she has touched and all the lives that have touched us. I truly thank God for all of you! If I return an email to you with just a few short words please know that it's not that I didn't want to say more but sometimes I can't. Please know that I am lifted up each day by everyone of you and it's through your words and
prayers that I keep going. Thank you, I love you all.
Love, Di

Oh my precious support team,
How my heart hurts.
We met with the Dr.'s a few minutes ago. They're not very encouraging. Bethany needs major surgery on her ventricles to her kidneys, they're both collapsing now. But they recommend not doing it if she's not going to recover neurologically anyway. So they recommend taking her to Children's when they can get her BP down and trying PT for a couple of weeks and see if she's going to respond to it at all. If she doesn't they'll send her home with hospice care. Scott told the Dr.'s he just doesn't want her hooked up like a puppet to be kept alive and that we're counting on the staff to tell us when enough is enough and the staff agreed. My question is....How much Lord how much precious Heavenly Father???? Please lift us all up friends we need your love and strength. We are so very needy right now. Don't give up on Bethany!!! We're not giving up til she tells us to.
I love you, I love you, I love you!!
Love, Di

09-13-04 They're going to do a CT on her kidney this afternoon. I'll let you know what we find out when we find out, who knows when that will be. Love, Di
Hi, Her medi-port is fine. Her blood pressure has been high all weekend, her heart rate has too and she's run a fever all weekend. They did an ultra sound on her kidney again yesterday. There may be a tumor on her kidney now. We've met a new team of Dr.s. They're going to put their heads together and let us know what they find and what our options are. She's still not responsive when you ask her to do things like squeeze our hands or touch her nose and the type of things she was doing last week. I wanted so badly to email good news to you, I feel like I'm starting to depress people and they won't want to read any more. I'm not sure I would if I were you. Scott's having stomach problems now too. They did find out Renee has gall stones and may have to have her gall bladder removed after the baby is born. How much more? How much more? My heart is heavy again for my baby and baby's daddy and mommy. We should have answers tomorrow on what's next but I'm guessing it's not rehab. Please hang in there with me. I need you. Love, Di

Good afternoon, We got better news after I was pretty worked up yesterday and the day before. Dr. Miller, the neurosurgeon came and saw her and said he thinks she's doing well enough to be transferred over to Children's next week. He also said that she's not as responsive because it's taking her longer to recover from the last surgery. We're going to have a family meeting with the Dr.'s again Tues. morning and then if all goes well they'll transfer her Wed. Now they're having trouble with her medi-port and they're going to x-ray it and see if it needs to be redone. I hope not because that means another surgery. Love ya all lots. love, Di

Good Morning, They moved her back upstairs to the ped's floor yesterday. She seems different to me. I hope it's just because she's trying to recover from this last surgery. She's not as coherent or responsive. She had another seizure yesterday too. We haven't heard back from her neurologist on her EEG yet. That's very frustrating. The nurses said they're planning to do another family conference with all of us and the Dr's again too. They told Renee it was on her home health care but Tues. a social worker from the hospital came in and talked to Renee about hospice care. So I don't want to freak out but it seams like something's going on that they haven't told us about. I tend to over- react so I'm trying to be calm. (not working) Our youngest son Chad who is in the Air Force in North Carolina sent us this this morning: God is our refuge and strength, a very present help in trouble. Therefore will not we fear, though the earth be removed, and though the mountains be carried into the midst of the sea; Though the waters thereof roar and be troubled, though the mountains shake with the swelling thereof. Be still, and know that I am God: I will be exalted among the heathen, I will be exalted in the earth. The LORD of hosts is with us; the God of Jacob is our refuge. Psalm 46:1-3, 10-11 Thanks Chadman Good Day my friends. Love, Di
Kerry and I came home from the hospital last and somebody mowed our front lawn. Thank you Thank you Thank you and Bless You. It's things like this and the dinners and the notes the prayers that help us get through all of this. I Love you all! Love, Di

One of my precious sisters sent this prayer and I wanted to share it with everyone: Father God, you are our great physician - we pray for healing for Bethany's little body...Father you know each cell of her body and with just a touch from you she will be free from disease and pain, please Father, bring her healing and comfort from pain. Lord, we pray for Diane, Kerry, Scott, Renee, Pat and Dave, and all of those that love Bethany, we know You love her best....Father help us to find comfort in that knowledge, bring us the blessing of that peace that passes all understanding, help us, Father, to comfort one another and give Bethany what she needs. Please Lord, bless Bethany's caretakers with compassion and wisdom as they treat her today....we pray all this with assurance that through Christ all things are possible, and thank you for your love for us. In the precious name of Jesus our Savior we pray. Amen
Love, Donna
Amen Thank you Donna. Love, Di

She had an O.K. day today. She's irritated with everyone and eveything especially Dr. Lamond
(that's what I told him). A good thing that came out of today is one of the nurses made a comment
about what a great family we have to be down there every day. I've heard this from several nurses. I can't imagine being any where else. If I'm not at work or sleeping I'm there. I've also had several nurses comment on how they can tell how much we all love Bethany and what a special relationship she has with all of us and then they always say especially with her Papa. They even talk amongst themselves about how when Papa comes in her vitals all go down, her heart rate and BP, everything. They tell me how when he's in there all alone with her just talking to her and comforting her it has brought tears to their eyes on many occasions. Kerry asked me tonight, how much of Bethany do I think we'll get back? I told him I don't know. I try not to get my hopes up too high or too low. I take each day at a time. I try not to dwell on the what if's. I don't understand why this is happening or what is to come out of it. I do know that many many sweet children are also suffering right now and many many mommy's and daddy's and grandma's and randpa's are hurting too. There's been many before us and there will be many after us. I wish I could answer the tough questions that come to me from friends and family. Like if God's a loving God how can this happen? I do know God is a loving God but I don't know His plan. I know that He loves her
more than we do and that she is His precious child. I know that most of those that have been there before us survived it so I owe it to those that go through it after us to survive it so I can
help them. I guess I had a lot on my mind tonight. Just add it to my bill.
I love you all!
Love, Di

9/6/04 - PM
The surgery went well. It was just her tube clogged so they were able to flush it and didn't have to replace anything. In the midst of all of this right before Bethany went into surgery, Renee (the mama who is 6 months PG) began having horrible stomach pains and vomiting. We called her OB they said take her to the ER there and they said take her to the OB floor. So they hooked her up on a monitor, the baby is fine. They are doing blood work and as of 9:00 when we left they hadn't decided if they were going to keep her over night for observations. She is feeling much better. They think it could be her gull bladder. So anyway, I'm exhausted, no I'm numb. I feel so numb that I can't even worry at this moment which I guess is good because that's not healthy:). So for now good-night. I'm going to take a tylenol PM and crawl into bed with my big furry bear type hubby and try to go to sleep. Til tomorrow my friends, Good-night. Love, Di
9/6/04 - AM
Well surgery #6 in a little over 5 weeks coming up tonight at 6:30. They are going to flush her shunt. If they can clear it that's all they'll have to do, if they can't clear it and it's stopped up they'll have to replace the tubing that goes into her stomach (which means opening up her tummy). If it's the shunt itself then they will have to replace it. At any rate they have to do surgery on the back of her head again. I believe this is surgery #12 in 3 years of her life.

She's very irritated this morning, she keeps reaching up and touching her head so she probably has a pretty bad headache from the pressure. The house is coming along nicely. Kerry and Scott are putting in the oak flooring today. I think this has been good therapy and father, son time for them. They could use a new couch and love seat though. There's is full of cat hair and smell. By the way the cats are gone.

We are all still hanging in there. We know this is a step back but shunt repair is a little easier for us to deal with, although going under anesthesia again is always scary. Thank you all for your love and support. It's so nice to have so many shoulders, I truly truly mean it.
Love, Di

Here is a copy of the script from last night. 9 News did a great job!!

DENVER - Diane Slaven's fingers appear to trip over themselves as she hunts for the right letters to form the perfect words.
Where's the "W" key? There it is. And there's the "e". It's coming out now. Eventually there's a sentence. "Well, where do I start?" she writes. There's more coming out now. "She's losing the battle. She had three strokes yesterday. This hurts more than words can express."

"There aren't enough words," Slaven tells us. "I can say the word 'hurt.' I can say the words 'my heart aches.' But, it doesn't even explain how I feel sometimes." Her granddaughter is sick, very sick, and there's not much she can do about it. So for the past two months, writing an on-line diary has been her release, her therapy.

Bethany Slaven is 3-years-old. She has neurofibromatosis. It causes tumors to grow on her nerve endings. Last year, a tumor formed next to her brain, and she lost most of her sight. This year, doctors attacked the tumor with radiation therapy. It slowed the growth, but hardened her arteries in and around her brain. The strokes that resulted have essentially paralyzed the right side of her body. "Every day there's something new, sometimes two times a day or three times a day," says Diane Slaven. "The other day, she smiled, that was huge. I mean, the little left side of her mouth smiled." It's the little things that mean so much now, she admits.

July 12, 2004. That was the first entry. "Hey guys, we're back in the hospital. Bethany has started having seizures." She put it on a web site for friends and family, "because people wanted to know how she was doing." Then came day 2. Then came day 3. July 14, 2004. "The princess got to come home today." She thought she could stop writing. She was wrong. July 29, 2004. The entries started again. "Well, our little princess is back in the hospital.. We're all having a hard time seeing our little girl like this." She was having seizures again. Something was wrong.

Diane Slaven calls it "the roller coaster effect." One day, Bethany is doing well, the next, her blood pressure is sky high and her entire body is unable to move. "We can go from laughter to tears in a matter of minutes," she confesses. Then came August 6, 2004. "Well, where do I start? She's losing the battle." Even today, Slaven gets tears in her eyes when she reads the words she wrote that day. "Soon, she'll be in a perfect place with no more pain," wrote Slaven, "Oh God, I miss her so much!!!" She thought Bethany wouldn't be able to make it another day.

August 9, 2004. "Well, this tough little girl does not want to give up.. She's moving her arms and head and responding when we talk to her." August 10, 2004. "GOOD NEWS!!!!!! She's off the ventilator." "It's just exactly how I'm feeling at the moment when I write it," Slaven tells us. August was a tough month. One day was good, the next, not so good. One day Slaven was writing about Bethany's paralyzed vocal cords, the next, she was writing about Bethany's smile that appeared to come out of nowhere.

Bethany continues to spend her time at Presbyterian/ St. Luke's Mother and Child Center. She had another surgery a week ago. It went well, according to her family. If all goes well, in a week or so, Diane Slaven may be writing about Bethany's trip back home. If all goes well."The perfect entry would be, 'she's going to be fine, she's going to learn how to walk and talk and live a long, happy life,'" Slaven says. Doctors caution the family Bethany's prognosis is tough to gauge.

"She has a spirit I think that's going to help her that not too many people have," says Dr. Thomas Smith. He adds that Bethany's family and their spirit will help as well.
So Diane Slaven continues to hunt and peck for the right letters to form the perfect words. Almost every day family and friends can find a new entry. It's therapy, Slaven says. And she has no intention of stopping.

Well her CT came back showing her ventricles are inlarged. Dr. Lamond came in and said he wants to wait til morning to do another CT and if they're larger yet then he will do another surgery to revise her shunt. She seems to be stying comfortable. Would somebody please stop this ride and let me off???? Talk to ya tomorrow.
Love, Di
Hello, We're back down to PICU. They think she's having seizures again. Her BP is up, her heart rate is up and she's running a fever of 102. She was very aggitated until they sedated her. They'll run tests. I'll let you know. Love, Di
We're having a good couple of days!! She's doing pretty well. They did have to do a blood transfusion tonight because her counts are low but she's doing fine with it. I've had good advise from my favorite firefighter, Nick, to not let the up's get me too up and not let the down's get me too down. It's working. Thanks Nick. Papa is sitting by her bedside caressing her to sleep for the night. Those big Papa Bear paws can be very comforting.

The 9 news story is set for Sunday night (the 5th) at 9:00pm. I guess they're doing a special hour before the 10:00 news. She'll get 5 minutes.
If all keeps going well they'll transfer her Tuesday to Children's.
Her web site will be up and running soon... thanks to our neighbor Mike. Talk to you all soon. Please keep up the prayers!!!
Love, Di
A smile for Grammy and Papa today!!!
That makes today a great day for us!
Love, D
Bethany had a pretty good day again today. Dr. Lamond took her head dressing off. She looks very swollen and has a very bad hair cut. I told Dr. Lamond not to give up his day job to become a hair dresser.

It was another incredible, beautiful Colorado sunset over the mountains tonight. It reaaly made me stop to be thankful for another day with Bethany, another kiss.
It also reminded me of a song from a christian artist from a while back named Chuck Girard. It went:

In times of desperation
In times of desperate need
When you're thinking not to clearly
A gentle voice does intercede....
Slow down
Slow down
Be still my child
Be still and wait on the coming of the Lord
Slow down and hear His voice
And know that He is God

Oh God, please comfort my little girl, please hold her in your arms and cradle her and give her peace. Thank you God for my peace. Thank you for another day with my princess. Thank you for being God. Amen
She's doing well today. She seems a little uncomfortable off and on. She is so strong though bless her little heart. They'll keep her one more night in PICU to watch her closely and then tomorrow she'll go back up to ped's.

The house is coming along nice. Kerry and Scott got the livingroom and her bedroom painted. They also put in a new toilet and floor in the bathroom. The landlord is going to comp them by taking some off the rent every month which will really help them out. They're thinking they want to do hard wood in the livingroom instead of carpet because it's a little easier to keep clean so I guess we need more oak parquet. We had 650sg ft donated so we need a lttle more. We're moving right along! So all and all things are good. I just wish we could convince Miss Bethany. We keep telling her she's going to get better and that it's all going to be O.K.. She just cries, so Papa cries so I cry and so on and so on. Til next time my loved ones,
What a long day. The surgery went well, it took about 6 hours. She's back in PICU, they're trying to keep her comfortable. She doesn't seem real comfortable at times, she cries. She has already tried to pull her head dressing off so that's a good sign, she never has liked those. We all are totally exhausted but hanging in there.

Our neighbor wanted to do something to help so he has started a web page for Bethany. It's It will be up and running soon. I didn't want to take away from my brothers sight for when 9 news does their thing so there won't be much yet. The 9 news thing is suppose to be this Sunday at 9:00. I guess they have an extra hour this Sunday. Chris with 9 news is trying to get 5 minutes, I guess they usually only get 1-2 minutes.
Well that's all for now, I'm going to go sit and veg for a little while. I'll continue to keep you all posted.
Love, Di
I wanted to just sit down this morning and introduce you to Bethany's mom and dad. I got to thinking that many of you don't know them.
Scott is 24 and Renee is 22, so you can see they are very young. They were married the April after Bethany was born.

Scott works very hard for a lumber company, he runs the yard. He is a man of few words and strong opinions. In fact you won't see him on the 9 news video, he has mixed feelings about them doing a story on Bethany but he agreed to it in hopes that it will help Bethany. I watched this carefree musician turn into a man the day Bethany was born. He owned up to his responsibilities immediately. I watched him transform into a bigger man as Bethany started having health problems at 7 months old. I've watched my son crumble and cry by my granddaughters bedside and there wasn't a thing I could do to ease his pain. He has strength that I can't measure up to.

Renee stays at home to take care of Bethany. She also has strength that I can't measure up to. She believed when the rest of us said our good-byes to Bethany a few weeks ago. Like Scott, she takes things on as they come and doesn't worry about the what-if's. I've watched this carefree girl stand up to trials that a young girl her age should never have to do. I've often said, if I'm a type A personality she's a type Z, we are so different. I've learned some things from her about being a little more kicked back. I've also watched her crumble at Bethany's bedside and then pull herself back up again. Renee has been having to endure all of this while caring our grandson who is due in December. What a load she has been carrying while spending all day every day at the hospital. You'll know who she is if you go to the hospital, she's the one curled up in a corner somewhere trying to get some rest.

Well I hope this sheds some light on who Bethany's parents are. By the way they applied for government assistance and were turned down. They have re-applied again. Isn't it nice to know that while so many are taking advantage of the system the ones who need it are turned down? Something's wrong with our system. That's why everything you all are doing for them is so appreciated. It is so nice to know that there are still so many good people out there who care.
God Bless each one of you!!
Love, Di
WOW!! What a response we've had to our cry for help. The paint is already bought and paid for by a gal that works with Kerry another gal that he works with gave him money this morning that we can use to buy linoleum. We're still working on the carpet. Kerry and Scott are going to begin painting tomorrow morning.

You all at NCAR, where Kerry works, are so awesome! The donations are over $1500.00 from you guys! Thank you Thank you Thank you!!!

The surgery is set for Monday at 10:00am. She's had a great day today. The P.T. came in and they sat her up and she was able to hold her head up on her own. She's making more noises unfortunately it's because she's mad but at least there's noise coming out of her.
Til next time.
Love, Di
Another good day today. She seems to really be on the road to recovery. Dr. Lamond, her neurosurgeon said he would like to do the surgery Mon. morning if there is OR time. We will know for sure tomorrow afternoon. This is the surgery to re-route her veins in her head to try to get more blood to the brain so the right side doesn't stroke. He will do both sides, the surgery will be about 4-5hrs long. Then back to PICU for the night then back up to ped's for about one week and then to Children's Hospital for about a week for extensive physical therapy and then Lord willing ...home.

So there is a lot to do to the house before she comes home. As most of you know they live in a rental owned by 2 elderly people that really don't have the money to fix it up. The house has had many cats live in it and needs a lot of clean up and work to get it clean enough for this little girl with tubes and traches sticking out of her. This is where you all come in, we need HELP. and we need it fast!! We need new carpet through out and new paint and new floors in the kitchen and bathroom. I don't know square footage but it's a 3 bedroom average sized ranch style home. Kerry has figured about ball park 110sq yrds of carpet and 270 sq ft of linoleum.

Nick, I thought maybe your "shoe lady" has some carpet connections. Everyone has been asking what they can do to help so here's your opportunity. I hated to ask but when it comes to this little girl I felt I needed to. What a great thing email is so a person can call out to so many at once. The news show should air 1 week from this coming Sunday, we may get help from that but I don't want to assume plus now we only have a couple of weekends to pull this together. I'm so happy that I even get to talk about her coming home when just 3 weeks ago I thought we lost her. This is so AWESOME!!! So you've been with me from the get go and now here I am with another plead, a different but better one. Thanks for being here for me through all of this!! XOXOXOXOXOXO Love, Di
SHE MADE A NOISE!! Papa was cleaning out her trache and she made a grunt sound, but it was a sound! Isn't it funny what gets us excited these days? She seems pretty comfortable. No news yet on the next surgery.

People are taking such good care of us, dinners every night. I can not tell you how much that helps us out. We can't tear ourselves away from her bedside. If I'm not at work I'm with her and if I'm not with her I'm sleeping dreaming sweet dreams of her. I hear her funny little nasally voice and her ornary laughs. She loved to tease, she would look up at me sometimes and out of the blue call me "Grandmother" instead of Grammy and just laugh. Where she came up with that I'll never know. I miss those laughs and that voice. I'll take a grunt for now.
Love, Di
A pretty quiet weekend for the most part. They moved her up to the ped's floor til her next surgery. They did an EEG yesterday because she has like a twitch with her head so they wanted to check it out. We haven't heard from the Dr. on it yet but the tech said there wasn't any seizure activity happening. She ran a fever over the night so they're running tests on that too. We haven't heard when the next surgery will be yet.

So we just sit and wait and try to keep her comfortable. She wasn't awake very much over the weekend. She gets very agitated when we have to mess with her to clean her trache or change her diaper or change her position.
My love to you all!
Love, Di
Well , her surgery went well. It took almost 21/2 hrs. She's resting now. It seems like she's kind of in and out. Ya know, I just sit by her bed and wonder, what is she thinking? I wonder if she wonders what is going on, why can't I move or talk, why does everyone I love the most keep letting these people hurt me? I also wonder what is in-store for her? What is her future? How much will she recover? Even if she could ask me I don't know what is in-store, I don't know what God's plans are. I only know that if I could make it all better I would. Oh how I wish I could.

Oh God my God please have mercy on my Bethany Please God!!! I Know He has a plan, I know it's all in His will, I know all the cliches. My mind knows all is well, my heart is having a heck of a time keeping up. My faith has not nor will not waiver but that doesn't answer questions or take away the pain.

Just my heart pouring out again today. Thanks for listening. I hope I don't start getting therapy bills from you all.
Love, Di

OK OK OK!!!! I'm so excited to send this email! Bethany had a great day today! She was awake most of the day, she got to go for a wagon ride and she pulled her feeding tube out of her nose 3 times which is a good sign that she's being her ornery self. Tomorrow they will do another surgery at 8:00am to put a feeding tube in her tummy, the nurse said she'll only pull that one out once because it will hurt. OUCH!

It really was a great experience meeting with Chris Vanderveen and the photographer Ken yesterday. Scott doesn't want any part of being on TV. He is so introverted (sounds like a couple of uncles of his). They don't know when it will air. The crew still would like to get some live shots of Bethany but the kids want to wait til she's up on the ped's floor and more alert. So I will let you all know when we hear.

So Praise our Lord for His work in our princess! We'll take everything we get and be thankful for it. It actually feels like maybe she will get to come home one day and carry on. I don't know what to expect but like I said I'll take it. So today the roller coaster went way up!! Just need to hold it there!!!
Love, Di

Yesterday was a better day for our baby girl. She actually moved her right arm!! The nurses and Dr's are so pleased. They say that most stroke victims take months to get to this place. It's funny how the little things that you use to take for granted are now huge mile stones. It's also kind of funny how things that were so important in your life now hardly mean anything. Yesterday I woke up with a rash on my face and my face was swollen from a new skin care I was trying. All of you who know me know that a month ago that would have been a huge thing to me, yesterday I just thought "bummer" and went on about by day. Kerry and I both have scratches and dings on our vehicles from the parking garage at PSL and it's like we look at it and feel disappointed but just shrug it off. Although I am still anal about the cleanliness of my house so there is some normality left in me so worry too much.

It's also so amazing how when someone's life is in the balance how you notice things more. We have had so many beautiful sunsets on our drive home from the hospital. It's like a reminder that God is in control. I notice pretty little girls laughing, skipping and squealing and I want to tell their parents to appreciate it that they can do that. Everything changes in your life when you go through something like this, I can't even explain it. Well, that's all for now my friends. We'll talk again soon.
Love, Di
Today I was interviewed by 9 news. What I couple of nice guys. they made me feel very comfortable and it's always a joy talking about Bethany.

She was a little more awake today. Papa is becoming an expert at cleaning her trache. I still am a little skittish with it but I'll get there. You know me, I can't let some dumb boy show me up. That's probably all for now. They're watching over my shoulder so I'll write when I'm alone again.
Love, Di
The Princess slept most of the day yesterday and today. They did a GI test today to decide if she needs a feeding tube and she does so they'll do that probably tomorrow or so. She hasn't been very responsive the last 2 days but her nurse thinks she's just getting some much needed rest.
Her BP is normal again. She was running a fever today so they're keeping a close eye on that.

Chris Vanderveen from 9 news contacted me today, he'd like to do a human interest story on Bethany and all she's been through and how so many have come forward to help. I talked with the kids and they're going to discuss it and let me know. I thought it may be a good way to get more donations to fix up the house for when and if Bethany gets to come home. He said it's not to raise funds but that would probably happen. He also said it can be quite an intrusion to us during an already stressful time. Anyone have any opinions on this? This is all new to us. Well, goodnight for now.
Love, Di
Not much to report this morning. She had a rough day yesterday. When she's awake she's very frustrated because she can't talk or move. She doesn't understand why we're not helping her so she crys alot. It breaks our hearts. Emotions are running high and there gets to be some tension between all of us but for the most part we're working through it. I have to be honest, I'm weakening and so is Kerry. Please lift us all up in prayer for more strenghth. We're hurting for this little girl because she's hurting and we can't help her. It seems like everything we try to do to help her irritates her more. Sorry this is a downer today.
Love, Di
Well they did the trachea yesterday. She looks more comfortable than she has in a long time. They found that her vocal cords are paralized from the stroke so she wasn't able to get enough air in. There were no tumors in her throat, it was from her vocals cords being somewhat twisted I guess is what they were seeing. We talked with her Neurosurgeon, Dr. Lamond last night about the other surgery. He has done 35 of these surgeries and 33 were on children. He was one of the first in the United States to start doing this surgery. Although this surgery was not invented for patients with NF, it's mostly for a syndrome called MoyaMoya. He is willing to do the surgery, what he will do is a type of by-pass with her arteries in her temple to try to get more blood to the brain. He's not certain it will help but he's willing to try. We all still feel we have to try anything for her because she is fighting so hard. Dr. Lamond is so pleased with how well she's doing already since the stroke. He said you usually don't see people doing this well for weeks or months after massive strokes. He won't do it til the end of August so she can recover and get a little stronger. Thank you all for the meals and calls and emails and especially the prayers! Your support is helping us all get through this.

Charlie, your web site is still reaching people.( We have had so much feed back from it and donations are still coming in because of it. Thank you for continuing to reach out to so many that we couldn't.

I swear this little girl is feeling everyone's love pouring out to her. We all are. I wish I could reach through and hug everyone of you.
God Bless you all! Love, Di
The rollercoaster goes up and then it goes down. Now we found out that they may have to trache her today. She's still having trouble breathing so they did a test yesterday and it looks like there are 2 nodules in her throat blocking her airway. They're going to go in and remove them and send them for a biopsy and then see if that helps her breathing and if it doesn't then they'll have to do a trache. It's possible her vocal cords are parilized from the strokes. No new news on the other surgery, I'll let you know.
Love, Di
O.K. are you ready for this? She smiled at us this morning. I was holding her in my arms and telling her that she can't talk right now because her brain has an owie. I said it's like you had a bad episode (that's what she called her seizures)and she smiled. We were so amazed. So I said it's like a really bad episode and she smiled again so I told her it's kind of like your brain went DUPE and she smiled again!

We met with the Dr's this morning and there is a procedure called encephaloduroarteriosynangiosis which basically a ventrical by-pass.It will get blood flowing back into her brain better. Her Neurosurgeon has done this procedure a few times but there is a specialist in Boston that invented it. We aren't sure who's going to do it yet. It will not repair the damage done but it will help to prevent another stroke. Her brain can still repair its self to the point of walking and talking again. They ave to wait 3 weeks after the stroke to be able to do this. So they asked if we wanted to do this and we decided that this little girl is fighting for her life so we need to do anything we can to help her. So again Keep praying. Love, Di
We should hear from the specialist today. Yesterday she was drinking water from a straw and when she wanted more we told her to shake her hand and she would. Although her heart rate went up to 190 and her bp went up to 180/128 again. She was reathing really hard too. The Dr. thinks she was over stimulated from the day so they gave her anxiety medication. We now call Scott daddy) the baby Nazi because he is forcing harsh rules on us and has instructed the nurses to do so also ;^). She's better this morning and resting comfortably. As usual I'll keep you posted.
Love, Di
GOODNEWS!!!!!! She's off the ventilator, she's drinking water, and she has answered questions with a yes and has said ouch!! There is a specialist Pediatric Nuerosurgeon that is going to look at her and see about re-routing her ventricals to her brain to get blood to her brain. KEEP PRAYING!!! THIS IS GOD AT WORK!!!
Love, Di
Well this tough little girl does not want to give up. We had a much better day yesterday and so far today. She's moving her arms and head and respondng when we talk to her. Her little eye brows go up when she hears us. The Dr.'s are amazed as are we. We are to meet with several of her Dr's tonight and get some more info. We don't know what to expect. I'll keep you posted and please keep up the prayers!!
Love, Di
Well where do I start? She's losing the battle. She had 3 strokes yesterday, her arteries to her brain are hardening and she's not getting oxygen to her brain. The put her back on the ventilator last night to keep her comfortable. This hurts more than words can express. Soon she'll be in a perfect place with no more pain. Oh God, I miss her so much!!!!
Love, Di
Well we had a little set back last night. She may have had another seizure. Her blood pressure is still high. This morning it's 170/115. They're going to do another CT this morning to make sure everything is OK. Her breathing is kind of rough although her oxygen level is good. On the good side she is squeezing a little with her right hand and she hasn't done that before. This is so hard and it's taking so long but they keep telling us to be patient. So please keep praying and I'll keep you posted.
Love, Di
Hi everyone,
Today they did an angioplasty to check her renal artery. It had shrunk to 1mm and they stretched it to 3mm it should be 6mm. It is a main artery into her kidney and because it shrunk it could be the cause of the high blood pressure. Here's hoping that this will help. The physical therapist sat her up today. We even got a little half smile in between the tears. Also when the therapist was stretching her arm I told her to reach for the stars and I asked her if she got one and she said yes. So every day there's a little improvement. She's still in PICU and probably will be for a while. That's about all for now.
Love, Di
Hi again,
Well yesterday she was alot like the day before. She woke up and least she didn't whimper the first time she woke up but she only stayed awake a few minutes. Then she woke up late afternoon and she was whimpering again.
The Dr. said the seizures were in her left brain so that affects the right side and her speach. He said she will talk again but it will be a couple of days yet. I'm sure that's why she whimpers because she doesn't understand why she can't talk.
They keep telling us to be patient, we're trying.
Talk to you all soon.
Love, Di
First let me thank all of you for your prayers, emails and calls. Today was a better day. She still did not wake up but on the way to the hospital this morning Kerry and I had such heavy hearts and we prayed for encouragement and God answered. They took her off the ventilator about 12:00. At first she was having trouble breathing on her own and they thought they may have to put her back on but then she started breathing well on her own. That was exciting. Then later she tried to open her eyes when we were talking to her but couldn't quite get there but she was definitely responding to us. The Dr's still say it could be 2-3 more days before she wakes up but we were happy with what we got today. She's still in ICU of course and the nurses there are awesome, they can't wait til she wakes up so they can meet her.
So we're better tonight hopefully we'll sleep better tonight. Again thanks for everything and I'll keep you all posted.
Love, Di
Well she did not wake up today. They took her off the meds that were keeping her under but the Dr.'s said that it could take a couple of days for her to wake up because she has been through so much and has had so many meds. She did respond this morning by shrugging her shoulder when we talked. When the nurses would have to do things like wash her or clear her tubes she would cringe and then the tears would roll down her little cheeks. Her blood pressure is still a little high. I gave her a little massage this afternoon and her blood pressure and heart rate dropped quite a bit, I guess she liked that. We're all exhausted, disappointed that she didn't wake up but we're still hanging in there. We take turns sitting with her 2 at a time although Scott stayed in there most of the time today. Keep praying keep praying keep praying!!
Thanks to all for everything.
Love, Di
They're keeping her comfortable, she is responding a little when we talk to her, mostly you can tell because her heart rate goes up.
Her BP is still high and they're not sure why. Keep Praying!!!
Thanks. Love, Di
What a rough day yesterday. They had to intubate her, she stopped breathing twice. She was still having seizures late into the night. They did surgery about 9:00 to revise her shunt, the Dr didn't think it wasn't working but he put in a bigger "valve" and hopefully it will help. They are keeping her under until tomorrow (Sat). They said her brain needs the rest. Please keep praying. We're all hanging in there. We have all had our moments for sure but we have a great support system.
I'll keep you posted.
Love, Di
Well our Princess is back in the hospital. She started having a lot of seizures this morning so Renee brought her to the ER at PSL.
She's pretty rough right now. She hasn't been really coherent since she got up this morning. She's still seizing here on the meds. They did a CT and it looks like the shunt is failing. The Neuro surgeon is in the OR right now and when he gets done he'll look and it's probable that she'll have surgery tonight. We're all having a hard time seeing our little girl like this. Papa and I just took her to a show last night at the Arvada Center and had a great time. This came on so sudden. I'll keep you all posted.
The Princess got to come home today. Much to her mom's delight but I think the princess liked it there actually because of all the attention. Anyway they put her on Seizure meds and will watch her closely. They're not sure what is causing them or if they are in fact seizures. Not knowing for sure is the most frustrating thing. We had their bills paid off with only $130.00 to spare but at least they had a clean slate for a week. Thanks for all your thoughts and prayers, I'll keep you all posted.
Love, Di
GOOD NEWS!!!! It's not her shunt and it's not her tumors or more tumors. They think the seizures are side affects of the radiation. They will send in a pediatric seizure specialist to check her out. They'll keep her a couple more days to observe her and get the meds figured out. This is so awesome, no surgery and they can control the seizures with meds.
Love, Di
Hey guys, we're back in the hospital(PSL). Bethany has started having seizures. They did a CT last night and the shunt looks ok so they're doing an MRI today about 12:30 to see if something is going on with the tumors. I'll keep you all posted.
Love, Di