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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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 :-)
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.
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.
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.
... 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.
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.
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.