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.
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.
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.
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 :-)
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.
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.
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.
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.
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.