Pure Bliss

It was a typical Saturday. We tried to convince Claire to sleep in, she didn’t. I went to the chiropractor and Jared tried to get stuff done around the place. Exciting stuff, like cleaning the kitchen, folding laundry and assembling the various things that I decided we needed during the week. At 4pm we had the behaviorist over to go over the plan. I knew that we needed to have a serious look at making some changes when her first suggestion for communication involved teaching Claire sign language. I had a huge opportunity to educate yet another person on what Rett Syndrome is and is not. Of coarse this took longer than we had expected. We lost our window to go to the Monterrey Bay Aquarium as planned and Claire was not happy with that. We had discussed petting the starfish for the whole day. Plan B, we go to the boardwalk. After some smooth talking, I calmed her down and we settled on going to the aquarium tomorrow, the boardwalk immediately. Apparently, everyone in San Jose had the same thought. Traffic was worse than we expected, but thanks to rock music compliments of Uncle Zach, she was happy to sit and move inches at a time trhough downtown. After Jared nearly had a break down finding a parking spot and we pushed our way through the crowd, we got to the carousel. After waiting in line, they went for the first ride and had fun. Then we took our cherry icee and soft pretzles down to the beach and had a little picnic. We couldn’t believe that we were having to bundle her up at the beach, but we did, it was cold. In the time that we sat in traffic and waded through people Jared swears it dropped 15 degrees. None the less, we sat on our towel, wiggled our toes in the sand and talked about God’s beautiful big ocean. It was getting late and it was time for one more ride on the carousel and to get home for dinner. We timed it perfectly, there was hardly a wait. Jared and Claire found a big brown horse to climb on that was close to where I was sitting. After all that walking in the sand, I was so content to be sitting. I was processing the day. Thinking about how I need to help the behaviorist to understand Claire. What do I need to be communicating to her teacher, the usual heavy stuff that I try so hard to get out of my head, often with little success. Then the carousel started and it was magical. She lit up. It was such an honor to see her in a moment of such pure bliss. There was no biting or hand wringing, no shakyness, she just glowed. Again, I find myself learning so much from her. Here is this child who is becoming painfully aware of her differences with every day. I can no longer discuss her “disability” in front of her as it upsets her. But in this moment, none of it mattered. She was sitting on the horse with her daddy, like many of the other children, and she glowed. It was so great that I even stood up to take a picture so that I could remember the moment and share it with all of you. I hope that wherever it is, that you get a moment of pure bliss this weekend like we did.

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