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

08-31-05
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

08-30-05
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

08-29-05
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

08-26-05
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

08-25-05
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

08-24-05
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

08-23-05
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

08-22-05
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

08-19-05
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

08-16-05
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

08-12-05
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

08-10-05
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

08-08-05
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

08-05-05
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

08-02-05
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

07-30-05
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

07-28-05
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

07-27-05
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

07-26-05
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

07-24-05
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

07-23-05
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

07-22-05
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

07-21-05
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.
http://www.redhillmotorcyclewerx.com

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 http://www.charlieosphotography.com
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

07-19-05
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:

Diane,
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

07-17-05
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

07-15-05
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

07-14-05
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

07-13-05
What a day yesterday. We thought the time was finally here. The anguish of, this is it, and then it's not.,
Unbelievable.
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

07-12-05
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

07-10-05
Hi,
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

07-08-05
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!).
http://www.pbase.com/cogard/bethanys_day
Or, check out his beautiful photography at:
http://www.charlieosphotography.com
I taught him everything thing he knows (NOT).
Love, Di

07-07-05
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

07-06-05
Hi,
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

07-05-05
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.
http://www.redhillmotorcyclewerx.com

07-02-05
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

06-30-05
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

06-29-05
Hi,
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

06-28-05
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

06-27-05
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

06-24-05
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

06-22-05
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

06-20-05
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

06-18-05
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

06-17-05
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

06-16-05
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

06-15-05
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

06-14-05
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

06-12-05
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

06-10-05
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"

06-09-05
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

06-08-05
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

06-05-05
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 www.charlieosphotography.com 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

06-04-05
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

06-03-05
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

05-31-05
Hello!!
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

05-24-05
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

05-23-05
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! http://www.gktw.org

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

05-12-05
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.
Love,
Papa Bear

05-10-05
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.

05-06-05
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

05-03-05
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

05-01-05
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.

04-29-05
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

04-27-05
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

04-26-05
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

04-25-05
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

04-22-05
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

04-19-05
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

04-13-05
Hello,
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!
Whoooohooooooooo!

04-10-05

04-12-05
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

04-10-05
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

04-06-05
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". http://www.gktw.org

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

04-04-05
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

04-01-05
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

03-31-05
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.

03-28-05
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

03-25-05
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

03-20-05
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

03-16-05
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

03-14-05
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

03-10-05
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

03-08-05
Hello!
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

03-06-05
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

03-03-05
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

02-27-05
"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

02-24-05
GOOD NEWS!

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

02-20-05
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

02-15-05
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

02-12-05
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

02-09-05
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

02-07-05
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

02-05-05
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,
http://www.charlieosphotography.com/
(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

02-04-05
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

02-03-05
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

01-31-05
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

01-29-05
Hi,
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

01-27-05
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

01-25-05
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

01-23-05
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

01-22-05
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

01-21-05
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

01-20-05
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

01-19-05
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

01-18-05
Hi,
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

01-14-05
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

01-12-05
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!

01-10-05
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

01-05-05
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

01-03-05
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,
Di

01-01-05
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:
slaven@ucar.edu
I love you all!
Love, Di