12.26.2008

We went with the less traditional Christmas this year. Christmas Eve we spent with our neighbors sharing a lovely meal. Afterward the children played and we finished with a birthday cake for Jesus. Once the sugar wore off and they were asleep we had some much needed adult time, complete with carols by the lights from the tree, while the boys had some Hennessy (Jared's contribution to the post). Christmas morning we laid low and called our family. Then it was off to the hospital to hang out with our friends Dani and Bobby. How we had such a nice time sitting in a hospital room for several hours I don't know, but we sure did. It was such a blessing to see how Claire uses her powers of cuteness to encourage people. She has such an amazing story to tell, and she tells it well. We returned home and the little thing was exhausted and slept. She woke up so happy and pleasant. We walked to the table to dinner and we were amazed at how well she did. We thought that we would push our luck and try on our way to brush teeth afterwards. This time we were a little more prepared and used our nifty new "flip" camera, complements of DNA :-) So here, we share our Christmas gift with you. There isn't anything that I could think to ask for that would be better than seeing Claire make progress toward walking independently.
video

12.24.2008

The best gift


I don't know about most three year old children, but I hear stories of what they do. With the way she works, Claire is not able to go sit at the table and draw me a picture and call it a gift. She does however do the most amazing things that I would never think to ask for. The other night I decided that I needed to check the warmth of her new down comforter, to make sure she does not get too cold at night. She was just waking from her nap and it was starting to get dark, so we plugged the Christmas lights in and looked at the trees outside. Of coarse, the big fat cat jumped up to join us, she can't not be the center of attention. As we lay there, Claire laughing at the cat, her hands were so quiet. She rolled on her side to look closely at the cat, and had the most serene smile. We had a quick discussion and decided that I would help her to pet Athena. As we pet the cat the most amazing thing happened, her arms and hands flowed like water. Often when giving Claire a map like this, her body often stiffens or resists. But is was so fluid, her little fingers would run through the cats soft hair and she just smiled. This went on for about 25 minutes, then Daddy came home and the cat jumped off the bed to guard the door. This meant so much to me, especially during this "holiday" time. We have had to make a focus for walking right now, which means not working a lot on Claire's fine motor skills. Of the challenges that she has, her hands are by far the biggest at this point. As we laid there and cuddled, it was like she was reminding me to not give up. I always have hope, knowing that God has a perfect plan for her. But I have also accepted that she will not do some things that others do. It was the greatest gift that I could ask for, her reminding me in her quiet way, that there is more to work on, that she can do it.

Left hand???




Typically, Claire has her most success with the right hand. Recently she sat down to watch Elmo's Christmas Countdown, a video that I have now seen at least 20 times too many. Athena the cat had been sitting in the chair and was not interested in getting out, so Claire joined her. The cat was shoved to her left side. As she sat there and watched the show, I could not believe what I saw. Claire was sitting, watching Elmo and using her left hand to pull the cats hair out. To make it more amazing, the cat just sat there and took it. It really amazes me how Claire will do things that we never would think to ask of her, when we give her the time. So we continue to go slow, take it moment by moment and treasure what we can.

12.18.2008

Sweetness


I know that her eyes aren't open, but seriously, that smile says it all. We had a good bit of fun last night. The little bear truly enjoys wearing different hats and being a big ball of silliness, which we absolutely embrace. I have been thinking a lot lately, part of the process I guess. We have had the"diagnosis" for over a year now, and still I wrestle with what it is and what to do with it on a daily basis. Recently I have found myself so grateful for the whole thing. The month of December seems to be such busyness for so many people, who work very hard to make sure that they have that memorable holiday. We have kept it pretty simple. A string of lights around the window, a small tree and a Menorah on a small table. I haven't gone shopping or purchased any presents yet, and I don't intend to. I have been enjoying hours spent in the kitchen making apple butter and other canned goods. Each day I have had the opportunity to enjoy so many moments, and I have. Taking time to listen to a stranger over a cup of coffee or not being the car rushing in traffic, the whole of it has been very enjoyable. It makes me so grateful for how I have gotten to know God in a very different way as a result of the messiness that has resulted from Rett Syndrome. I think that through it I am able to see so much else, not just being able to celebrate the 10 seconds of standing that Claire surprised me with or being pateint with her during meal time. But also being able to see the smaller victories that happen all around me and being able to see the charachter of God in them. It has left me on so many occasion thinking to myself, sweet.

12.09.2008

Frailty

It has been since Christmas 2005 since I have been able to say that I have had a really nice holiday. New Years Eve, 2005 my mom was in the hospital recovering from a series of small strokes. By the time Easter came in 2006 she had had her "big" stroke and had been told that with her new diagnosis of Amyloidosis, we shouldn't expect more than 6 months with her. Several holidays have come and gone since then, and she is well. It was a year after the stroke and she seemed to be doing better and we were able to move back to California. It was at this same time that we came to realize that there was something different and special about Claire. It wasn't until Oct. of 2007 that we got the diagnosis for Claire, that she had Rett Syndrome. It is very interesting to go through life with two of the people closest to you on the National Organization of Rare Disorders list. It makes me think about the whole Christmas thing so differently. Is it fantastic that God sent his Son to save the world, absolutely. But I have such a different and deeper appreciation for who God is, based on how he did it. The human form is so frail. We are creatures of such complex design. With all the DNA that makes up our body, so much can so easily go wrong. To me, the miracle is not just that Jesus was born a virgin, but that he walked and talked and led a normal life. I am so grateful to get to take the month preceding the celebration of the birth to contemplate how amazing God is, that He loved us enough to send a Savior, and that He is awesome enough to do it like He did.

12.05.2008

It's working!

Not yet a full week in yet and already I can't believe the change in Claire. Today, when we got home I set Claire on her stool in the middle of the living room. I sat in front of her and we talked about the day at school. After explaining my desperate need for hugs, I helped her to standing (with very little assistance) and wrapped her arms around me. Then she let go! She let go and stood there grinning at me for at least 10 seconds. This is an all time best, life to date for her. She then bent her kneed and sat back on her stool with complete control. Every other time she has stood independantly, it has ended falling or leaning in some direction, this was so purposeful. I am so proud of her. When her dad came home the little exhibitionist continued to show off her new talent. It is awe inspiring to see her come out even more. At school she has settled into her routine and is now eating more like herself. Most of the notes and comments that I get from the teacher talk about how much smiling she does. I can tell how she enjoys being pushed and working at the goals that I can only imagine she has set for herself.

12.03.2008

Learning a Lot


August 22nd I walked over to the school district office and signed the releases to start the process to review Clarie for preschool. I can't believe all of the ups and downs we have had on this journey since then. The psychologist calling to say it shouldn't take more than 10 minutes to meet with Clarie as there was so little to work with. The augmentative communication specialist coming and being blown away by how advanced Claire was and how well she understood the concepts. The IEP meeting where I got to argue with the OT to have the word "degenerative"removed from the report. Over three months of process and we ended up, the day before Thanksgiving, wondering when it would end. Then I got a call. Claire would start school on Monday.
Dec. 1 8am we headed out the door with enough time to go and stop at Starbucks and get a kiss from Andrew, Claire's favorite barista. When we arrived at school Brad came out to help us to the classroom. With a stroller and a walker, it is a project to get everything in. Claire was so excited to see Brad, it just so happens that he is also Grace's (Claire best buddy) dad. He did such an amazing job of talking with her and explaining the system. I think that she has a much better understanding of the process than I do at this point. Since they assume that I am a neurological typical, I get less explanation. We hit a rough spot when she fell sideways while standing in her walker and then screamed for about 35 hours, I mean minutes (it felt longer). It is hard to describe how isolating the first day felt. Here I am in a little cubicle with Claire screaming and biting herself with people staring and so much going through my head. This was touted as the Cadalic program, a place so many people wish their kids could get into. But it is so clearly not designed for Claire. I could hear the voice of the school district rep in my head, "Their just isn't a good place for her." As she is screaming I am thinking, if this is the best, how are we going to make it work. Yes, we were in the Cadalac program, but Claire needs something more suited to driving in the mountains in a blizzard. She stopped screaming, we played a little and the teacher told me it was time to go. Since then it has gotten better. Maybe it was good that they were able to experience the entire rath of Clarie in the beggining as a warning, as to say, be careful, you don't want to go there. There are still a few bugs to work out, but we are all learning, and Claire is too. The picture is of Claire, excited and just about to leave for her first day of school.