Re-posted from cotaforbensonandclaires.com
I don't want this post to sound negative...but it might. I'm just saying it how it is. No sugar coating. No pity parties. Just how it is.
I was really hoping Claire's second birthday could have had a bit more HAPPY in it. As it turned out, we were at the hospital from 8:00 a.m. till 4:30 p.m. No break. What a way to spend your sweet little one's birthday. Dialysis went fine. Although towards the end, she let us know she was ALL DONE! I knew we were in trouble then, when she was "all done" and it was only 11:15. The three appointments that followed were good. Except for the waiting time that is typical of doctor's offices. It seemed e x t r a l o n g and annoying. Especially where you're placed in a small room for 45 minutes (when you've already been waiting for 20 in the other waiting room) with a 2-year old, with hardly any toys, no window, no kid books, and your both tired and board out of your mind WAITING!! The sink became our greatest source of entertainment. But seriously, an automatic on/off faucet only stays fun for so long. I'm a pretty patient person. And so is Claire. So you know it's bad when we were both just about ready to scream! Okay, maybe not scream (although Claire did voice her annoyance quite loudly a few times) but both our frustration levels were reaching their max!! It was a simply a long day at the hospital on one of the few days of the year we would simply rather not be there.
Such is life. Our life, at least. For now.
You can tell I'm still just a tiny bitter about the whole thing. Be glad I didn't post last night or it would have been worse.
When we finally got home, Grandma Susan, Benson, and Jared had decorated the living room with streamers and balloons. It made me happy. It scared Claire. She didn't want any more stimulation. We finally got her to walk inside the room, but she wasn't the least bit interested in having any sort of party or open presents. She was tired. Benson gladly volunteered to help her get going with the wrapping paper, and once she saw how much fun he was having, she joined in. She was excited about all the fun gifts she received and we ended up getting a few smiles out of her. She blew out the #2 candle on her birthday cake and we took her to bed.
The best part for me about her birthday was simply remembering her coming to our family 2 years ago to the day, to the hour. Giving birth to her was a marvelous, energizing, wonderful experience and I love remembering that moment when she was placed in my arms and joined our family.
It was a happy birthday, because it means she has been with us for two amazing years. She has touched many people's hearts in her short time upon the Earth and I'm certain her influence upon others will only grow. Happy Birthday sweetest CLAIRE!
(pictures to come tomorrow)
Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.
Saturday, September 12, 2009
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1 comment:
I just want you to know our thoughts are always with you guys! So sad about Claire's birthday...I KNOW that next year's will be soooo much better! We love you guys!
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