We Walk Slow

Again I sit here and struggle to know where to start. The highs were so high and the lows so painful. Claire’s brain did some really scary stuff while we were in the car, twice. At the stroll-a-thon she got deeply sad as our friend took the mic and started to discuss why we do it. When Dr. Kaminsky started to explain the various trials she got really upset and I took her to were she couldn’t here. But once everyone was done talking about rett syndrome things turned. She had a lovely time. She definitely enjoyed her escort of caped-crusaders as we strolled around the park. She smiled on the way home that sweet content smile. She laughed at dinner and quickly drifted off to sleep without anymore brainstorming. It was such joy to be in the presence of people that we love so much and to be supported by friends like we were. I struggle as I think was it worth it. It is easy to say that you would do anything to keep your child from having an episode like that but I know that this happens with things that are this exciting and I don’t know that I can fully commit to a completely planned and boring life. Over the course of this eventful weekend a song has been playing in my head. So instead of exhausting the subject of how annoying Rett Syndrome is, I will leave you with this. It inspires me, certainly we must walk slow.

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