Bedtime

Thought that I would share more of what bedtime around our house has been like lately. We are incredibly blessed to have a three year old that, for the most part, enjoys her bedtime routine. I now wait to see if she will stay in her bed where we put her or wiggle her way out. Either way we win!

Thank you for the award!

I am very excited that an award was bestowed to our blog. My amazing friend Brooklyn gave it to me. You can check out her blog here. I am supposed to put up some logo and pass the award to 10 friends. I am so sorry for not doing this, it is a little too complicated for my fragile mind. But we are grateful for the award and wanted to make sure to say a huge thanks to Brooklyn for it. Brooklyn and Kelly we love you and wish you didn't live so darn far away!

So excited!

I haven't been blogging much lately because I have been using all of my energy to communicate with several schools and all of Claire's various people. Today we had a very exciting day. She got to go back for her second day of school to Mount Hermon's Playschool. Playschool is a really neat preschool that has many fun things that Claire really enjoyed, mainly lots of kids. She had great fun playing with clay, watching the fish and hanging around the train table. When I went to pick her up she was beaming, she was so happy. We then got to take a break at home for a little down time and food before heading off to physical therapy. Sue our amazing PT could notice a huge difference in Claire's demeanor. Since she has spent most of the morning having fun and playing, her body was very loose. She was able to take several steps while holding onto a swing, a very unstable object. As we left Claire was so proud of herself for doing such a good job. I can't believe how hard she worked, but she was so excited to be able to put the pieces together and do it. She was really aware of where her body was and what she was doing. She knew that she was doing things that don't normally come. We came home, both of us exhausted from the rigours workout. I was surprised that she didn't crash in the car. When we got up to our place I laid her down, took off her shoes and read a story. Certainly, she was close to sleep. Imagine my surprise when I went in her room 45 minutes later to find her in her bed laughing and playing. We had a little talk about how exciting it was that she had such a great day and important it is that she sleep so that we can play later on when Daddy comes home. Amazing, after that she went right out. Here is a video of what I saw when I went in, before our chat. Thought I would get it on tape, in case I need to remember of great she is some other time when she is overtired and unruly.

Victory is Mine!

I think that it is safe to say that things have been a little more on the overwhelming side lately. January has a lot of volume of things happening for us, which is great, but it is a lot to manage. With so much going on, I have decided that I just might never be on time to anything, but I am not about to spend a bunch of time rushing around, life is just too short. Today was a full day, like most are. I worked from 4-7 in the morning, so I got a bit of a jump on the day. For the first time this year, Claire was actually a minute early to school, they weren't looking for us, as they have grown familiar with out five minutes late routine. Next we had a neurology appointment with Lucile Packard Children's Hospital, which is about a 45 minute drive. It was a miracle, somehow we got there 4 minutes early, we never get to doctors early. It was fun. Being late does not bother me, but it was fun to be on time for two appointments. By the afternoon, we lost the momentum, Claire's babysitter called to ask where we were, she got to the house 40 minutes ahead of us, you just can't win them all.

Wii

Claire has been having fun learning to bowl on the Wii.

Frameshift

I was recently saddened as I read the pain that a friend of mine was going through. She too has an amazing little girl with Rett. The day came for her to go to the DMV and get her disabled place card. She described it as a hard, tear filled experience. Her blog was filled with comments from other families that too have taken that difficult trip. It got me thinking. Why is it that we view disabled people the way that we do? I thought about my experiences growing up. Honestly, I can't think of any with disabled people. I imagine that is the way many people are raised. Because it is something that is so far removed and foreign, we begin to view it as something bad. If I had a dime for every time I have told somebody that Claire has Rett and they respond with some sort of devastating reaction. I wish so badly that that wouldn't be so. I am so convinced that God has already and will continue to do great things through Claire, using her even the way that she is. Having a child with Rett Syndrome is definitely not easy, it it very hard. But it seems that to compensate for the added degree of difficulty, it is so much richer. I never would have thought to ask for this, for the "disabled for life" club, but I have to say, it has the most amazing members. I am grateful for this "frameshift" it has enabled me to see the world differently, using more of a panoramic type lens.

The picture is from Saturday, Claire has really taken to playing the Wii with her dad, she can't get enough!

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.

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.

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.

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.

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.

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.

An amazing weekend

I know I am still posting a little late, but our weekend was just too rich to keep to myself. It started for me at 4:15am Saturday morning as I left for work. It was such a fun day a Starbucks and I got to work over 7 hours, something that doesn't happen often. Customers were coming in ready for the beach and in a good mood. It was one of those days where even when things were going off a bit, there was excitement and intensity and everyone was having fun with it. The highlight was Claire coming in with Jared, the look on her face when she saw that I worked there was puzzled at first then she released a big grin. It is one of her favorite places to visit, she gets a disgusting amount of attention when we go there. We spent the afternoon just hanging around the house, riding the tricycle and other such fun that is appropriate for warm summer weather. Sunday we were off to the church gathering early in the morning and then home for lunch and naps. When we were back up it was off to Kelly's Bakery to meet our friend Tim. There is something about sitting on the patio with iced tea, a cookie and the sunshine that just helps me to let go. A bunch of wineries just opened tasting rooms in the same area so we walked over and the boys were excited to find a local vinter with an amazing complex pinot noir and a port that will be released in December. We thought that it had been a perfect day and we started to head home. We then decided that we would take Claire for a quick ride on the carousel. So we went to the boardwalk, rode the carosel, got a big cherry icee and played in the waves before sitting on the beach and watching the sun set, with, I kid you not, a few dolphins frolicking in the bay. It is times like this that remind me how little I am, and that if I sit back and watch God be God, it will be a lot more beautiful. The picture is Jared and Claire once we finaly made it home.

A diverse pallatte

One of the great things about living so close to the ocean is that there are lots of yummy things swimming around in it. Friday a friend went fishing and captured a bunch of rockfish and crab. As you may know I am a huge fan of slow food, it doesn't seem to get slower than this. We were invited over on Saturday for Ciappoino to celebrate the catch. As the soup cooked we sat around picking out nuggets of crab meat and thought that we would see if Claire enjoyed the sweet richness of the crab. Turns out that she is a crab eating machine, who knew. She also seems to enjoy calamari even when it is not breaded and fried. The soup was spectacular. I found it best to avoid using a spoon by using several pieces of fresh bread to soak up the tomatoy goodness. Claire's feeding extravaganza continued as she enjoyed pancakes and crisp bacon this morning. We then went to church where she got to play with the other kids her age. When we picked her up we learned of yet another culinary delight that she seems to enjoy, popsicle sticks dyed red and covered in glue. Who would have known? This is Claire's "Tower of Babble," I love how they were able to incorporate her different sounding speech into the lesson.

Still here

I am sorry for not posting for so long. The last few weeks have been trying times for me. I have had to focus on Claire and spending every moment on structuring our world for her success. It has been very rewarding. Since I last posted, Claire has pulled to stand off of a stool, with only the help of secured hands, once she places them. That is so huge, also her standing balance has improved greatly. These two things are very important pieces two walking, something that I pray that I see her do. This week Claire has started to use her left hand to make choices and hit her swithces, something that I never would have thought to work on or ask for, she just started. It is so amazing to me how fearfully we are designed and the things that we are capable of. On the more overwhelming side of life is our battle with the schools. Claire turned 3 October 24th. In the special needs world, that is a pretty big deal. She aged out of her 5 therapist that we worked 9 hours a week with. We got two new ones that we work with between 2 and 3 hours a week, but it was a shock. The way it is supposed to work is that Claire starts school when she is 3, something that she is looking forward to. Unfortunately the school district is afraid of her, they don't understand her. As a result, they have chosen to take the lower road and through little diligence on their part, we still have yet to meet for an IEP. The IEP is the plan for having Claire in an education environment. Currently the meeting is set for Monday and I am trying to stay focused until then. Otherwise, life is going amazing well up here. We are still enjoying the bounty of the harvest and all of the fun things that food brings. We have enjoyed many meals with good friends who are walking with us during this trying period in life. Now that it is Novemeber I am starting to look forward to the holidays. This will be our first year celebrating Hanukkah and I look forward to teaching Claire about it. So there is the update, now I feel like I can start blogging again. The picture is from Claire's birthday, but she wore the same thing for Halloween.

Delayed Gratification

I have recently started to can fruits and vegetables in order to take full advantage of the amazing harvest period that we have here. We were over at dinner and a friend offered us tomatoes that they had picked from their garden that day. I had to decline because we already had too many. Now that I am honing my canning skills, I hope to never have to decline fresh, free food again. I really enjoy the process of canning. It is a slow and very methodical process. I have found that with many recipes the longer it takes, the more rewarding it is. Today I made apple butter and grape jelly, neither of which went very quickly. The jelly had to be made in two different sessions because I wanted to make sure and get it right. The apples butter simmered for hours as the sugars caramelized and our home filled with the aroma of harvest. As I sit now and listen to the final jar pop closed I have such a wonderful sense of accomplishment. To go along side that, Jared asked, "So when do we get to eat this?" He had a hard time understanding the concept of making food for later and not now. It made me stop and think, wow, that is so the world that we live in. Maybe that is why it is so hard to set aside time to do this. I am so consumed with meeting the needs of now, it is hard to look to the future. I think that instant gratification is something that has become embedded into our culture and I am seeing that we are slowly starting to break from that, thanks to the forces of Claire. Because of her severe apraxia and dyspraxia (sorry about spelling) she doesn't have the luxery of instant. She has to work so hard and have so much patience. Until we get a more progressive communication system in place, she often has to wait until I figure out the right choices to offer her. Talk about delayed gratification, she sees something that she wants, looks at it, smiles at me. I am in my own world, who knows how long it takes before I figure it out. But she is patient, waiting for me to see the cues. I do think that she has something going for her, that the delay before the reward, certainly makes it richer. Since I assume that you have come to my blog to see and hear about Claire and not my rantings, here are some pictures from Saturday. We went to the pumpkin patch and then to lunch in Half Moon Bay. We had a lot of fun, and soon we will have pumpkin soup.

A rich weekend

It was a wonderful fall weekend for us. It started with the first rain. Jared spent the morning up at Mount Hermon in the trees and Claire and I stayed home and cuddled under blankets and watched the rain on the window. By afternoon it had cleared so we were off to the harvest festival at the farm at UCSC. Jared had been to the campus before, but it was a first time for all of us on the farm. We went with my friend Colleen who studied and interned on the farm and new all the ins and outs and cool things. Claire really liked getting her face painted. My favorite things were the grilled corn on the cob and the squash that I purchased to cook up later this week. Jared enjoyed the fresh pressed apple juice. Of coarse there were so many things to love, the bluegrass bands, the hay ride, u-pick sunflowers, apples right off the tree, and so on. It was so amazing to see how they are training up farmers to go out and use sustainable practices and all of the different aspects that it involves. Sunday we tried to sleep in, but Claire didn't. When we woke the house was 66degrees so we lit our spicy candles and started cooking in the kithcen. I spent most of the day at an amazing canning workshop where I made apple butter, quince jelly, and canned pears. It was such a great celebration of the bounty that God provides. I love that we are preserving it now so that when it isn't growing here in a few months I will be able to crack open a few jars and not go buy fruit imported from Argentina or fake fruit soaking in corn syrup. Jared and Claire went to church, where she made her debut in the preschool classroom, very exciting. To to put an exclamation point on the already great weekend we went to a birthday party for our friend Tim. It was at his parents home which is nestled into a redwood grove in the Santa Cruz mountains. As we arrived there were 4 deer in the meadow about 2 feet from the car. Claire just loved the deer. She also loved thebig red barn and the garden that she got to eat tomatos out of. We left tonight amazed at what a rich life God has given us. Amazing friends to enjoy all of the glory of fall with, we are so blessed.

October is Rett Syndrome Awareness Month

It is Rett Syndrome Awareness Month and this holds a very special place in my heart. Last October I received a call from one of Claire's
doctors, the test for Rett Syndrome came back positive. That call did not change Claire, who she was or what she would be. It gave us an answer as to why. Why had she stopped feeding herself and crawling. Where had our sweet girl gone? We learned that she was in the "rapid destructive stage" and that was the cause of her frustration. Today I am proud to report that she has returned and is in the next stage. Daily she is making progress and surpassing any and all expectations. She is able to use her walker with assiastance and has been challenging herself while standing. Claire has made incredible strides in her oral motor skills and recently told her speech therapist that she was "done" once annoyed with the activity, a word that we have been hearing a lot more of. It is amazing to see Clarie do things that we never knew she would do. I love how she is contributing to our lives and the lives of everyone around her. If you would like to make a contribution to the International Rett Syndrome Foundation on her behalf we would be grateful. You can click here and visit the Care and Cure Cafe to see Claire's biography and make a toast to her. Thank you very much to all of the people that have supported us and prayed for us along the way. Thank you also to Mr. Mueller, who was able to capture an amazing picture of Claire, a little girl who doesn't really sit still.

A busy weekend

We had yet another rewarding and exhausting weekend. Saturday we headed up to Oakland for the natural history study. It was fun to see the doctors again and it was nice that they did not bring up any new concerns. We saw many families that we had met before and also made a few new friends. One of Claire's friends is Roxie, in the picture she is wearing the green outfit, and we have been able to see her twice in a month, very exciting. The picture was taken at a golf fundraiser while we were in Arizona, I couldn't get all of the girls in the picture because of the cactus, but I got almost everybody. After a long day in Oakland we came home and rested and got to go to church on Sunday. We have missed our friends and getting to go to the gatherings and worship and learn. It felt so good to be back, three weeks is too long to be away. Now it is Monday and we have what feels like a million things to do. First I have to feed Claire as she is just waking up and the therapist is due here in 5 minutes. Looks like it should be another adventurous week. I know that I haven't been updating here very often, after we get done with the transition into Claire being three, I hope to get back here more often.