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.

11.19.2008

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.

11.09.2008

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.

11.05.2008

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.

10.12.2008

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.

10.05.2008

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.

10.02.2008

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.

9.29.2008

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.

9.22.2008

It's good to be home









We have made the journey home and it is good to be back. This was our first time driving from AZ to home as a family so we thought that we would take the scenic route. Claire absolutely loved being back by the ocean, she was all smiles. We thought that we did a good job of throwing her around and wearing her out before the last 100 miles of our drive and that she would be out for the last leg. No, she was so excited to be home that she sat and giggled and smiled at the trees the whole way home. I don't know what it is about the trees, but they make her so happy.

During our little pit stop we thought it would be a good idea to stretch a little. Claire was more in the mindset of doing a full yoga routine. We had so much fun, it is so amazing to us to see her continue to come into her own as the period of her life known as the "rapid destructive phase" fades further into the distance. I know that I shouldn't be surprised that she is so amazing, she was fearfully made my God to be exactly what she is, but for some reason I am still in awe. As we drove the the wine country of Paso Robles she would look out her window and take it all in and I wish so badly that I could know all of the things that she is wondering about the world that she lives in. We did talk about the obvious things like why do the vineyards sparkle and what sound does the cow make. She loves to laugh at her parents as we try our best to make good animal sounds for her. Speaking of cows, here is a picture that I took as we got a little closer to home. I love cows so much, I hope that some day we can live on a farm and be closer to some, especially a farm like this one.

9.17.2008

Adventures in recycling

We got home late Tuesday evening and I had a very inportant task to complete. I was told by my father that my sole responsibility while he was away was to put the recycle bin out on Tuesday. On the front of the bin is a label that explains that it is only picked up every other week and that it must be on the curb by 5am. As I drove through the neighborhood late Tuesday night I did not see any other recycle bins, but there was a family of javelina's at the end of our drive. I pulled in the garage and shut the door before daring to get out of the car. Javelina's are freaky things and there were babies, which implies angry momas. Being the chicken that I am I called my friend and she suggested a flashlight to keep them away from me. So I dragged the huge bin of junk mail and water bottles to the curb as fast as I could and ran back into the house. To my surprise no evil javelina came charging at me from out of nowhere. The next morning we were leaving around 9 and I went to retrive our bin, since it was the only one sitting out, I figured all of the other good home owners had already brought there bins inside. To my dismay it was still full. So I dragged the big bulky thing back to the garage, figuring it was an off week. Later I told my dad that we had the week wrong and that no other bins were out. He had such a simple answer for me. "Oh, nobody else recycles, so ours would be the only bin out." Of coarse, why didn't I think of that! And this leaves me with reason 157, why I don't fit in in Scottsdale anymore.

9.15.2008

Having fun in AZ


We have been here a few days now, long enough for the dust to settle, and we are having a great time. It is such a blessing to see Claire and her acomplishments through the eyes of my friends. Today we had the pleasure of spending some good play time with my friend Kathleen and her two boys. Kathleen was so excited to see Claire in her walker chasing the two boys around the living room. She might not be fast, but she is smart and we had a great time with it. It is so easy to forget how far we've come when you look at all of the things that you are working on in that moment, last time we were playing together Claire was struggling to stand and watch the boys play, she has come so far! Next we went to the park and Claire turned herself into a sand castle while the boys monkey climbed all over the place. It gives her such peace when she gets to play side by side with other little ones. It is such a good remeinder of the perfect little girl that she is and that she is "typical" in so many ways. I have also found myself thinking about how perfect God is that He would create her this way so that I can learn these lessons from her. I am so humbled that He would give me this incredible gift and everything that I need to take care of her. Now that there is a picture, Sam in the stripes is 5 weeks older than Claire and his brother Gary is a year older. The question is, are they giants, or is Claire a minature?

9.13.2008

Sad for Fountain Hills

I have been in Arizona for almost a day and I have already gone through such a range of emotions. Driving into Fountain Hills from the airport was great, it is a very beautiful landscape once you leave the cementness of the city. Red Rock was a great sight as it stood against the desert that was green from recent rain. Once we got to town we hand to arrange for food and that is when things took a turn. We went to Safeway because the more local chain seems to be under construction and I couldn't go there. Safeway is enormous and filled with lots of nothing in my mind. It was very overwhelming to navigate the many isles of boxes and packaged goods. As I went through the store I wondered how it is that the people have come to demand this sort of nonsense. It took us a long time to get here, but I have to hope that if people stopped to think about it, maybe they would be appaled too. I went to get Claire an avacado and was shocked when I read the label that bragged that it was from Chile. CHILE! I was fortunate to find one ripe avacado in the organic section that was from California, so we took it. While we were looking for some fresh pasta the store manger tried to hock some ribs at me, claiming that I could get some special discount. I asked where the meat came from and he looked at me like I had a third eye, why would you want to know that? He didn't answer just walked away. We made it out of the store and to the safety of my parents home where I was greeted by cases of bottled water, sad. The next morning Claire and I set off to the health food store, I remembered that they had been carrying local produce and I was excited to see what they had. I was really sad to hear that they were not able to keep offering the locally grown products because nobody would buy it. The customers reported that they were driving 25 minutes to another store to get stuff that was cheaper. At that moment my heart sank. This wonderful local business trying to do a good thing for all parties involved couldn't continue because the consumers wouldn't support the effort because it wasn't cheap enough. This is in a town filled with golf coarses, 600k condos and big burly Hummers. This morning I really feel sad for Fountain Hills, they have the resources to have it, but not the intelligence to know what it is.

9.09.2008

Split between two worlds

When I woke this morning I knew it was going to be a good day. Claire was asleep and I was able to spend a few extra minutes in bed listening to the rain as it clinked in the gutters. Once we got up we were off to the Abbey to have tea with friends, the perfect drippy morning activity. As we walked in Jeff Buckley was belting out "Hallelujah" through the speakers and I smiled as I thought about what a perfect song that was for that moment. The rest of the day went well. Claire napped and had a great PT session, I got lots of calls made and bills paid. Since I had a babysitter for the late part of the afternoon I thought that I would go to the nail place and get shined up for our trip back to Arizona. It has been a year and a half since I have embarked on an adventure like this. It was surreal. I decided that since I was there and this doesn't happen often I would get both a manicure and a pedicure. I was a little surprised that I was able to accomplish both tasks at once, something that I never would have dreamed of. It made me start thinking about the whole interaction. It seems that there is a large demand for people to be rushed through their relaxation. I thought that maybe the girls were just trying to get me done so that they could be ready for the next person. Then I listened to the people around me. One lady said to make sure to put the rhinestones on her toes and three minutes later told the man to never mind, she didn't have time for it. Another lady sat and chatted on her phone bragging about how she was leisurely enjoying her time at the salon, although she had just rushed in and told the people that she needed everything done quickly because she was already running late. How sad that our culture is such that people want their nails painted but can't wait for it to dry. I think that in the future I will stick to tea at the Abbey and steer clear of the salon. Now I have to go get this stuff off my fingers, it's creepy looking.

9.06.2008

Did I mention I love it here?

I don't know if it technically counts as an Indian summer, but it feels like it. As we left the house it was 90 degrees outside and some of the leaves that have fallen filled a corner in the garage. Since we are going to be on the road for a bit we thought we would go get a nice long walk in and here is some of what we saw.

Little Claire was stoked to be out and watching the surfers and all of the fun stuff down at West Cliff Drive.

We were fortunate to arrive in the middle of a nice set and got to watch some good action. You never know what you will see and today, this super cool bike was one of my favorite sights.

My other favorite is watching Claire and Jared take in the surfing action.

I am always amazed at the great things that we encounter on our walks. Today, not only were there all sorts of spectacular sights, there were several people playing bongo drums in a few different places. Also the surf was very high and as the waves crashed a lot more spray came up onto the sidewalk. I don't know if it is just my new and improved superpower of smell, but the salt was intoxicating and the sweet smell of the ocean was more intense and alive for some reason today. It was a great gift.

9.03.2008

Over the hill and through the woods..

...off to Stanford we went. Today we had the opportunity to go see our doctor in the Behavior & Development Unit at Lucile Packard Children's Hospital (part of Stanford hospital). I was not looking forward to this visit. I was afraid that it would be me having to defend Claire to the doctors and that they would be off base and I would be frustrated. I don't know where I get these crazy ideas. Along the principal of "the truth will set you free" I find myself needing to listen to Claire. As our physical therapist pointed out, anyone who is intelligent will see how bright she is. It amazed me today how I didn't have to fight. I now find myself thinking, why is it that I expect a fight, why wouldn't others see Claire for the bright light that I do. Before I was done with paperwork, we were called back, did the measurements and didn't wait long before a fellow was in to interview us for the doctor. It was her first time meeting Claire and we had a nice interaction, but it was great that as she was leaving she said, "Clearly, she is a very bright little girl." She went off for a bit and came back with the doctor. The doctor was thrilled to see Claire and that she was doing so well. It was such nice validation, it is not just me, she is doing great! I think that the doc was half expecting me to roll Claire in and see even fewer remnants of a child that once occupied her body. She was beside herself at how well Claire was doing and happy to write as many letters as we need to make sure that things keep happening for Claire. It was one of those long and really rewarding days. Driving far in loads of traffic, but to hear from a doctor that knew Claire during the regression, she is better.

8.31.2008

Slow Food Nation '08


It all started as we headed up to the BART station, trying not to rush. We so badly wanted to get to the fun and it was the day that Claire picked to sleep in. Eventually we left and were able to catch the 11:35 train to the city. As we walked up the the civic center area I could hardly stand it. A whole celebration about food and where it comes from. Personally, I see it as a manifestation of God's greatness. He has given us so much and if we are good stewards, there are the most amazing rewards. Jared was starving so we went straight to the food. After getting a small plate with two Georgia biscuits with Serrano ham and fresh berry preserves we watched a comedy team perform on the soapbox, making sharp point through funny skits. Then it was off to the marketplace where we saw vendors from all over California selling their goods. It was so fun to see so much from where we live. There was no need to buy things because many of the vendors we already use at home. We spent the next few hours going between getting a bite to eat and walking through the victory garden and listening to people on the soapbox. I think that the highlight of the day was listening to a man speak about the honeybee population problem and another man who spoke about the labeling of meat and poultry. It seems like there is so much that I can do to help, it was very empowering. The concept of taking the time to know where your food comes from is sadly foreign in this culture, yet easy and rewarding. As we left, we began to dream about someday moving up to Petaluma and becoming farmers. For now we'll be happy where we are, knowing our butcher and where he gets the animals that we eat.

8.27.2008

Super Claire!!!!!!!!


After having a week off to goof around, Claire was back to work today. I know that I shouldn't be surprised, but she keeps doing more and more, always surprising me. We started the day with a quick trip to our friends at Starbucks. The highlight of the trip was a kiss from Andrew, Claire loves that. Then we were on to OT and speech. Claire not only made it look easy in two tricky swings, she also amazed Joy, the substitute speech therapist. I was so encouraged by Joy. She seemed to be convinced that Claire is soon to be using a device and that she will go well in a full inclusion program. These are dreams of mine, but to hear it from somebody inside of a school, it was very encouraging. To further add to her super day, she napped on cue and finished her lunch just as PT came to the house. PT was also remarkable. Claire's standing is getting better and she fell forward a few times, very exciting. Then as the icing on the cake, she yakked all afternoon with Kim, the sitter who she adores. I feel so blessed by today, it is almost too much to absorb, but I am enjoying it.

8.26.2008

The glass is a quarter full


Last night I had the opportunity to spend a little extra time with some friends that I have made working at Starbucks. It is really fun to have one foot in a world that doesn't involve therapy or advocating or genetics talk (not that I don't love that stuff, I do). During this time I also got to enjoy one of the best cappuccino's of my life, which was really good for my soul. As I sat there thinking how I have got to do this more often, my friends got to a discussion that involved the glass being a quarter full, I love it! That is really where I am at. Sometimes Jared thinks that people have no idea that our life is so hard and complex because I put on a good face. I have been thinking about this concept against the back drop of Psalm 118. God has blessed me with so many amazing days, many filled with my sweet little Claire. Although it is hard sometimes when people ask questions, it is so rich at the same time. Recently Claire's little buddy Grace came over for a few hours. As we were in the car on our way to have Claire fitted for new AFO's (little plastic boots that go in her shoes) Grace asked why Claire needed to go to the doctor. I responded to the affect that the boots would help Claire to walk better. The next question fired off by the sweet 3 year old, when will Claire be a big girl like me. I tried to explain that Claire is a big girl. She is sleeping in a big girl bed and using the big girl potty, and soon she will be 3 too. Fortunately I think I bored her to death with my reply and the next statement was beautiful. Grace looked at Claire and said, "I love you little Claire, you are my best friend." As I fought back tears I represented Claire and told Grace how Claire loves her and that she is Claire's best friend too. As I go through these moments it seems that it could be devastating, but so beautiful that God gave us a sweet little Grace who loves Claire, even if she doesn't talk. So I think that I am going to go with the glass as being a quarter full, but really, I am not entitled even that. I haven't put pictures up in a bit, if you would like, I have added to my flickr page, we were in Monterey on Saturday.

8.21.2008

The sound of music

Today we had to trek into civilization to see one of Claire's doctors. Since we were close, we paid a quick visit to Ikea. As I bolt from the car to the returns area (a 7 minute walk) I sang with Claire like I often do. I never really thought of it until one of the cashiers gave me a long, and painful stare. It wasn't an annoyed, 'shut your screaming kid up' stare. It was more of a 'you look crazy and should be locked up' stare. It got me thinking, why doesn't everyone go around singing? I am guessing that they are too busy and self conscious. The weird part is, I am not a singer. There are a handful of musically talented people in my family, I am not one of them. I used to sit in the front row of church so that nobody could here me sing. Today I find myself with a child who craves music, melody and rhythm. After mulling it over a bit I have decided to continue the signing in all circumstances, it is really fun. I really do believe that the world might be a little bit better if everyone sang a bit more. Imagine, a musical at Ikea, brilliant! For those of you interested in the doctor stuff, Claire is doing great! Her head grew a lot and has put her back on the curve, in the 3rd percentile (her head size has never gotten to the curve, so that's exciting). If you have seen her lately and thought, wow, she's tall. She is, Claire made it to the 20th percentile for height. She lost 2 ounces, I told her doctor that with those long legs now she wants to be a model.

8.19.2008

She blew it!

Today Claire has decided to assert her two year old sense of humor on me, I have finally stopped laughing so I can share this with all of you. Let me set the background for you. We spend a lot of time working on oral motor skills. January we started to use a straw, by June she had gotten good at it and could even drink water (think liquids are more difficult). We are also working on blowing a flute, something that she has gotten very good at in the last few weeks. She has also dabbled in blowing bubbles in her apple juice, and I ignore the behavior. Today it all culminated. We had been enjoying lunch, she was well rested after a long nap. We had to use the potty in the middle, so this left her in her shirt and diaper as we got to the end of the meal. She hadn't eaten a lot, so I gave her the option for some Superfood, one of her favorite things. I am lazy, so I figured that I could put a straw in the bottle (like I have done 100 times) and hold it for Claire. She enjoyed it and was all smiles, then her smile got a little wider. She went for another sip and boom, everywhere, massive bubbles and superfood all over. After the shock of being covered tow to diaper in green juice, she laughed hysterically. We wiped everything up and she was very interested in having some more juice. We talked about how blowing bubbles in juice is a no, no and she had another chance. Sure enough, more bubbles, but she controlled it to stay in the bottle. Needless to say, we will be using cups with lids, because blowing bubbles is fun, and it's harder than it looks.

8.17.2008

Party for the Osborne's


Tonight we celebrated the Osborne family as they head out on a new adventure to Redding, CA. We will miss them and I am really glad that we got to have one last party with them before they left. It gives me such joy so see Payton clearing all of the toys in Claire's room to make way for the dance floor. This time she had the foresight to bring good dance music, as Veggie Tales wasn't cutin' it. As everyone arrived all of the kids gravitated to the disco party that had ensued in Claire's room. At one point we were told, "No adults allowed" which was great really, because we had a nice time getting to talk just the adults. We are so blessed to have such good friends here. Claire loves having tons of other kids around, although it is a bit much for Jared, it's worth it. Having 19 people over for dinner could be overwhelming, but it's just so fun. We will miss you Travis, Annette, Payton, Jonah and Davey. If you ever need a disco fix, you know where to find us :-)

Oh,how I love the market!

If you haven't figured out yet, I love food, really a lot. As a person who is very involved with food I do also use it as a tool to cope. Today I ventured off to the Scotts Valley Market in need of onion rings, because they make me feel better. First I ordered our sandwiches from Colleen (you can always trust a person with a name like that) and then I went to the buffet to get my prize, onion rings. To my dismay, there were none to be found. I asked if there were some in back and Colleen said she could throw some in the fryer, so I figured, sweet. You can imagine my surprise when she left the counter area and went to the produce section only to return with, onions! I left to the check stand with fresh pressed sandwiches and onion rings that are to die for. I was thinking it was a little close to when the crew was coming over for dinner and a little soda could help get everything done a bit quicker, and soda and onions go very well together. To my delight, the market sells single cans of soda, I didn't have to buy a full 20oz. of carbonated sugar. What joy! This may seem very trivial, but I do love the Scotts Valley Market, and the fact that if I need three fresh fried onion rings and a little taste of soda, it will be there for me, along with all of the other amazing things there.

8.14.2008

It all started with strawberries


Wednesday is our day to pick up our CSA stuff from a house a few blocks over. This has been the primary reason that I love Wednesday. Yesterday, it was only the beginning. It had been a good day, Claire worked with three different therapist and all went well. She was in such a good mood that we were able to go get our assortment of fresh stuff soon after it was dropped. Claire sat in the car enjoying the sweet melodies of Social Distortion and I got to go feast with my eyes. Stacks of boxes of fresh berries and vegetables, bags of plums and apples, brown eggs (still dirty with feathers) artisan bread and fresh goat milk. I just love to think about all of the families that will sit around their tables and enjoy this bounty together. Food this fresh and amazing really does deserve a proper family meal. Unfortunately, the feast would have to wait for our family until Thursday. We did immediately enjoy the blackberries, strawberries and broccoli. Though the blessing of a friend and babysitter, Jared and I were off to dinner, alone. It was fantastic, we feasted on tempura vegetables and sushi. The plan was to head North on 1 and watch the sun set from a beach. But we ate for too long and the sun was gone. Plan B, we walk on the beach by the boardwalk. It was fantastic. We were almost transformed into teenagers again as we stood in line for the "Hurricane" a roller coaster with lots of fast twists and it turns you upside down. We had almost begun to feel young again and then we looked around to see all of the wee little ones that were out so late. Then we felt old, but we were having a great time so who cares? The fog was rolling in and it was getting harder to see the lights of the wharf out in the distance. It was about 60 degrees yet it felt like summer. After the skyride (which is a bad idea with sandals) we got a big bag of cotton candy and went for a walk on the beach. I really do need to figure out a way to do this more often, as having cold sand in between my toes has the most amazing calming effect, or maybe it was the sound of the crashing waves. We walked along the beach watching the tide roll in and out and consumed mounds of soft billowy refined sugar. I don't know why, but for some reason when the tide swelled we were so mesmerized by it that it didn't occur to us that we were about to get it, but it felt good in a cold wet salty jeans sort of a way. As we walked back to the car we discussed this is yet another reason why we love living here. We just might go do it again next Wednesday, or find a new adventure.

8.11.2008

Musical Prodigy?


Claire often has too think of creative ways to get her point across with the limitations that her body puts on her. Today we have been using the walker to get around the house and we went into her room and stood at the piano. In typical form, I have my narrow mind set on what she should be working on. I thought that she could stand at her piano and bend down to touch the keys and work on bending at the hip and knee. Well, once again she blew my mind. I asked her to play some music for me, assuming she would reach down with her hands. No, she put her knee up on the keys and started playing and did so for about 4 minutes. She then put her foot down, turned her head and smiled as to say, "Yeah, I found a new way." Isn't that just the sort of thing a typical kid would do to be goofy. Needless to say, we are having a great Monday.

8.07.2008

Tidepools and Salt

Claire and I only have one hour of therapy today so we decided to blow off the world and go for a long walk along West Cliff Drive. To say that it was inspiring would be lacking but I will try to share a little with you. It was a bright day and the water seemed to have a million shades of green and blue. There were so many birds, many flying in a v formation, which totally amazes me. Today I really enjoyed watching as the water drained out of the tide pools. What an interesting balance that the life in that area maintains. I guess in a way I feel like I am living in a tidal zone myself right now. Waves crashing on me intermittently, but without the waves, it would be such a dull existence. As I was enjoying the sight of a wave crashing on the rocks I got an overwhelming taste of salt in my mouth. It was magnificent. It would be an understatement to say that I love salt, it so much more. Salt is the element that wakes up your palette so that you can fully enjoy the flavors of food. I could ramble on a lot more about how amazing salt is, but I won't bore you. But seriously, it is so vital to our world. Seeing, hearing, smelling and tasting all of these things was such a rich experience. Claire did love it too. I do wish that I could know what deep thoughts are behind that sweet grin on her face as she looks out at the birds skimming the top of the ocean. It is such a good lesson to spend time not talking. I think that talking is our human way of proving things to ourselves. Like if it isn't said out loud or written than it can't be true. I am starting to think that the most significant ways of communicating have very little to do with language.

8.05.2008

Another full day



It started this morning with a trek over the hill to Palo Alto to see Claire's primary care, who we hadn't seen since Sept. '07. Claire totally overwhelmed the doctor and she is going to go read a bit and we'll see her again in two weeks. The weigh-in is always a point of concern for me, but the champ weighed in at a whopping 24 pounds 8 ounces and is 34.5 inches long. The doctor gasped with joy and elated, "She's on the chart!" as she opened Claire's file with the new measurements. After that was done we stopped at In'n'Out for a little lunch for mom and headed home. After a rest and some lunch, Claire had an hour of PT with Tiffany. She was in full 2 year old tantrum glory demanding that she wanted her vanilla shake (from In'n'Out) now. We were using it as motivation for her walking in her walker, oh did she have her own thoughts on that. All in all, it was a good PT session, Claire did well and she even convinced Tiffany to let her take a break from walking and play on her iGallop. Next up was OT with Pat. Things really started to get exciting when we started to work on self feeding using the new water table (which was made with love by Claire's Grandpa). We started with veggie sticks and she was doing well, it got us to thinking. So we broke out the whip cream and had a party! I always love therapy sessions where people who know Claire and work with her tell me things like, "I know that she will spell and count"and there is such an overwhelming sense of promise. It sure helped to balance the doctor who questioned why I thought Claire was not retarded. If you would like to see all of the photos from today's OT session click here.

8.04.2008

At the end of the day...


... it all worked out. Claire had yet another inspired play therapy session. Our neighbor with two young girls came over and I got some adult conversation while Claire walked around in her walker and played with her friends. After they left she was very tired, which resulted in yet another cute picture. It was a very rich day, that we both enjoyed very much.

Trying to make sense of it all

If this post makes any sense to you, you are most likely crazy like I am. With that said, let me set the backdrop. Claire and I have been going to Music Together once a week for over a year. At the start of every class we sing the same song and pat our hands on our legs to the rhythm. Claire's little tiny gene mutation for some reason causes her to have a lot less use of her hands than the other children. Today the teacher asked who knew what song we would start with. Before any child could shout out, Claire quietly tapped her hand on my leg three times, to the rhythm of the Hello Song. She knew, she just can't tell us. During the songs she had fun and laughed and played until the egg shaking song. My heart breaks as she sits there and looks at everyone else and gets sad. I pick her up and dance in an attempt to distract her from the disappointment of not being able to shake her egg. At the end we sit in the circle for the Goodbye Song and again, she quietly tapped her hand on my leg, hitting about every 12th beat. My heart broke and I tried to fight the tears. I can't believe the strength of my two year old. I don't think that it has ever occurred to her that not trying is an option, and she has to fight so hard for each small thing. It blows my mind how much she and I live in such a different world than a lot of the other mommies and children. I try very hard to try and maintain a typical life, but why? Because a typical life is better? This forces me to wrestle with so many issues. I struggle from feeling isolated from the world that we live in. When I stop and take inventory I do feel that the world that Claire and I live in is much richer and I wouldn't want to be anywhere else. I guess that like anything else balancing between two things is harder than the comfort of either extreme. This is something that was just talked about at our church. Perhaps it's easier to be a liberal or conservative and swing all of the way in one direction. But that is not the example that Jesus set for us. I guess I am doomed to a life of finding balance, but given the circumstances, maybe that isn't the worst thing.

7.30.2008

Rockstar at the farmer's market


Today we ventured out to the farmer's market in downtown Santa Cruz. Recently Claire has taken to wearing cute hats, however, this has come with a problem. When wearing a wide brimmed hat, it falls over her face and she can't get it off, she then starts to violently hate life. So today as we walked around downtown, the hat had to come off. Oddly enough, it was sunny in Santa Cruz and poor Claire closes her eyes when the sun is on them. I didn't want her to miss the wonderful sights that God had provided at the market. The pleasure of looking at the peaches and plums. The corn, tomato and peas. The piles of fresh lettuce, it is so evident that God loves us that He designed food perfect to consume during hot weather that grows in the summer. Being a resourceful person I decided that the time had come for sun glasses for the little bear. We were downtown already and I knew of a great baby store with lots of organic stuff in it. Sure enough, they had the perfect shades for the little one. I was astonished at the transformation that took place as we placed the shades on her head. Instant rock star! As we walked around downtown an even greater number of people waved at Claire and made cute sounds as they walked by. So by the by, it was a great day. We got grapes and onions (everything else came in the CSA earlier in the day) and sampled some good Indian food. We saw amazing flowers and savored the sweetness of various stone fruit. So if you see Claire around in her rock star glasses, please don't ask for an autograph 1. She is still the same sweet Claire and isn't headed out on tour 2. She can't hold a crayon to sign, but we are working with the OT on the matter.

7.28.2008

Almost like Christmas

Slow Food Nation is coming and I am so excited. Excited like a child before Christmas. I contemplated making a chain of little paper loops and allowing myself to break one off every day until the event, but I think that it might be going too far. I cannot say how excited that this is and that it is happening somewhere that is so close to me. So if you see me around and I look preoccupied, I am only dreaming of the big event in the back of my head. Below I posted the Slow Food Manifesto which is something that I find so inspiring. No I don't read it at night before I go to bed, but I think that there is a lot to glean from it.

7.27.2008

Words to Eat By

The Slow Food International Manifesto

Endorsed and approved in 1989 by delegates from 20 countries

Our century, which began and has developed under the insignia of industrial civilization, first invented the machine and then took it as its life model.

We are enslaved by speed and have all succumbed to the same insidious virus: Fast Life, which disrupts our habits, pervades the privacy of our homes and forces us to eat Fast Foods.

To be worthy of the name, Homo Sapiens should rid himself of speed before it reduces him to a species in danger of extinction.

A firm defense of quiet material pleasure is the only way to oppose the universal folly of Fast Life.

May suitable doses of guaranteed sensual pleasure and slow, long-lasting enjoyment preserve us from the contagion of the multitude who mistake frenzy for efficiency.

Our defense should begin at the table with Slow Food. Let us rediscover the flavors and savors of regional cooking and banish the degrading effects of Fast Food.

In the name of productivity, Fast Life has changed our way of being and threatens our environment and our landscapes. So Slow Food is now the only truly progressive answer.

That is what real culture is all about: developing taste rather than demeaning it. And what better way to set about this than an international exchange of experiences, knowledge, projects?

Slow Food guarantees a better future. Slow Food is an idea that needs plenty of qualified supporters who can help turn this (slow) motion into an international movement, with the little snail as its symbol.

7.25.2008

Where you go, there you are.

I was reminded today of a saying that I was told on a trail ride when I was in high school. "Where you go, there you are." I know that it sounds so obvious, but so accurate. Lately I have found myself watching where I was going, but not so much being there, but being in the next step. Today I had the pleasure of iced tea at the Abbey with Colleen and Grace. We discussed my obsession with a need to buy a home, which is really silly. As I walked in the door to our apartment I felt a sigh of relief, I was home. Why is it that I am constantly fighting the urge to be planning or working on the next thing? It seems crazy to have to work at the beach bum mentality, but I will not give up. If you would like to see pictures of Claire and Grace at the Abbey click here to view my flickr page.

7.22.2008

Iced Tea

Today Claire and I had the pleasure of venturing into Costco to get milk and supplies for The Abbey (coffee lounge at our church). After unloading the goods Sarah was kind and offered me an iced tea for the road. How had I forgotten what good tea tastes like I don't know, but I was reminded. The tea was intense and flavorful, it tasted so crisp and fresh. I don't know how Starbucks gets away selling the iced tea that they do, but they have deluded a lot of people into thinking that it is refreshing. As it might be decent, it is not fresh and bright like the iced tea that I experienced today. The drink was almost the highlight of my day. But Claire just laughed herself to sleep and I have to say that that takes the top honors, but the iced tea from The Abbey is right behind it.

7.17.2008

Dinner

Jared insists that I share with you all about our dinner too, so here it is. We had a marvelous dinner at Rio Adobe, our favorite place for New Mexican food. The gazpacho was fantastic as it always is and so was my shrimp burrito. The crowning moment of the meal was the sopaipillas. The three of us sat enjoying our fried dough covered in honey and powdered sugar while chatting with Jim, the owner. He told us about how he is able to serve lettuce for lunch that is picked that day, awesome! We talked about how great the bounty of the Salinas valley is and how lucky we are. Then we discussed how rough the winter is, with so much less growing. Beets, and that's about it. We decided that having a winter full of beets with an absence of snow isn't the worst thing in the world and we will be grateful for what we've got and where we are.

Snack Time

Today Claire and I had the pleasure of going to the city and seeing my cousin Zach. I love going to the city and the more I go, the less stressful driving there is. Today we had the pleasure of rich sourdough, which always tastes better when eaten in San Fransisco. We sat outside the ferry building and had sourdough dipped in apricot sauce and fresh strawberries. It was so nice to sit and chat and enjoy fresh air and some simple good food. Claire has been working very hard. Yesterday she worked with 4 therapist and Friday she has 3 scheduled. She is making such good progress, it is hard to not constantly be doing therapy type activities. I think that is what made today so sublime. She got a day to soak in all of the things that we are working on. She laughed a lot today. It is so great that she can laugh and have fun without challenge. Isn't that all that really matters?

7.12.2008

Dinner at Alice's

It was a very long week as my body was fighting some major infection and I spent too much time with a very bad fever and in the company of doctors and nurses. Today Jared had the opportunity to help out and "work" on some demo rides up at Alice's. Claire and I got to stay home all day and I wasn't much fun. As the day wore on I was desperate to get out of the house. Somehow, it seemed rational to drive an hour through the forest to go have dinner with Jared and a few others. So glad that we did. Claire loved it, as she does eating in any place that is not pretentious. She was particularly smitten with Tim, one of the characters from Jared's work. It was such a simple dinner. Sitting and talking about the day and all sorts of other nonsense. During this sublime experience it occurred to me that Claire just fit in and everyone that we saw excepted her. I started to wonder why is it that because she does not use her mouth to speak and her hands to play like normal children, why do I assume that she will not be accepted. I suppose it is because there have been times, when she has made others uncomfortable and it has been brought to the forefront that she is "different". How sad it is that there is a part of our culture that requires that we conform to boundaries and expectation, but what a blessing it is that we live in Santa Cruz, where there is a lot more room, and people seem to be accepting. After it was wrapped up and Claire was snug in her pj's, back into the car and our journey home began. Quite the journey it was, words cannot explain the beauty of Skyline Blvd. just after sunset with a beautiful moon.

7.02.2008

The Spider and the Cat

This morning I found myself intensely enjoying watching a spider cast a web all over our porch. I talked about it with Claire as we finished our oatmeal. When finished, we sat at the window and watched. Oh how I wish that I had an icon for spider and web. It is so hard to spontaneously do things with Claire and use laminated icons to communicate. To my advantage she was more interested in pulling the cats hair, so we used our cat icon, that for some reason I have two of.

6.28.2008

Permanence and Serendipity

Today was such an unusual combination of events, yet somehow it is so natural. I started at 4am this morning going to work for a full 8 hours (I worked 8 hours in the last two weeks). It was a pleasure and I had a lot of fun. One of the younger baristas told me that I was really "rockin' it on the bar", which was nice to hear as I feel old and out of practice. The afternoon was filled with cuddling with Claire and the usual play. The babysitter came and Jared and I got to go out. First we went to a place called Staircase where I got my first tattoo. Then we went to the Seabright Brewery for the most amazing fish and chips. The tartar sauce had the perfect amount of fresh garlic. Then we went for a walk along the cliffs at Pleasure Point and got cold watching the surfers, who certainly were freezing in that water. The most amazing part of the day was when we stopped by Fins Coffee. To our surprise and complete delight there was a bluegrass band playing. Five people dressed in red and black playing old hymns. After the break they transitioned into country by way of a duet that looked like it belonged on Broadway. It was such a simple pleasure, enjoying my tea, listening to songs that were a hundred years old. To top it off, as I looked out the window there were three beautiful old "woodies" parked. What an interesting place to live. I never would have guessed that this is where I would be, but now that I am here, I love it!

6.26.2008

Helping the bees

Today we got to have lunch with Grace and her mom, Colleen. As we sat and chatted Grace headed to the flowers to play. She drifted farther from the table and Colleen asked her to come back closer to the table. Grace explained that she was helping the bees to pollinate. Colleen was so patient while she explained that the bees didn't need her help, they could handle the job themselves. It was a moment in time that my brain clicked. I am so busy trying to help Claire to do everything that I want her to do. Truth be told, God has the situation under control. He is so good at that stuff, just like He made the bees perfectly to help the flowers, He is perfectly caring for Claire.

6.21.2008

Several victories


Today was a day filled with small victories. Together they add up to make the most amazing of days. To start, Claire seems to sleep in the car if I play Social Distortion. To add to this victory, Jared now enjoys listening to it, so it works well. We drove down to Monterey today to beat the heat. Clarie enjoyed her sandwich in a park at a beach. It was warm, but not hot, she loves to watch people on their bicycles, it was brilliant. We proceeded to the Monterey Bay Aquarium. Lightening was flashing around us as we walked in, I thought that surely we would be stuck, but no, so I consider it another victory. Claire had so much fun. She stood at the bottom on a big glass wall in awe at the hammerhead sharks and tuna above us. We went to several different exhibits and she soaked it all in. For the first time, looking more at the marine life than the people. She stood shoulder to shoulder with other little ones, Jared picking up a starfish and some kelp for her to touch. Then, was the best victory of the day, communication. We have been working on including icons in Claire's life to help her to communicate. When we left the aquarium we asked Claire to make a choice for us. I help to icons in front of her, a car and a bowl of ice cream. I asked her if she wanted to get in the car and go home or if she wanted to go to Ghiradeli and get ice cream. I even put the ice cream icon in the harder position of the two. She looked at both she thought, she grinned, she picked ice cream. We immediately proceeded to stand in line and order a big fudge sundae. While we waited she sat and saw the others enjoying their ice cream, the look of excitement and anticipation was beautiful. We then went to the car, put Social Distortion on and back to sleep it was for the little angle. I have been really trying to wrap my head around how to communicate practically with Claire. A smile and a frown are cute, but very limiting. I find myself at the end of it all, so grateful. Grateful that Claire has Rett Syndrome and that I get to see this whole other version of the world that we live in, grateful that we live in Santa Cruz and even when it's hot we can escape, grateful for the many victories that filled today. This is my first crack at blogging, so bear with me.