It’s hard to know where to start. The days have been fairly routine. I’ve been sick, Claire’s been at school and physical therapy most days. Chloe started swimming lessons again. As I sat and watched her the grief washed over me like a tidal wave, this is what people do, people who have kids that walk and talk and stuff. It was beyond surreal to see her just jump into the water and put her goggles on and practice blowing bubbles. Parents lounged by the pool drinking coffee and doing little else. It was weird, I felt like a fish out of water or as Captain Awesome puts it, “like a paddle board in our living room”.
You see last weekend we went down for a rest weekend with friends. While we were there Jared got a new paddle board and got to take it out for a few hours with Chris. Side note: Paddle for Sorel is June 14th and if at all possible, you should come, details here. We got home late at night and realized we didn’t have a place to put the 12 foot long board so it ended up in our living room. The huge board looked really out-of-place. The next morning Jared remarked, “it looked so much smaller in the ocean.” So true. Doesn’t it all look smaller in the ocean. I want to live there, where Rett Syndrome is a little tiny thing, floating in a huge sea, not creating any waves or inconveniences. Yet each morning, I find myself inland, tripping over it in the family room. You can’t get around it or forget that it’s there. You have to plan for it and take great measure to make sure that it doesn’t get damaged by carelessness. So I sit and try to not make sense of it all but just wonder. I wonder what accommodations will be made next. I wonder how long it will be until it all looks proportionate again. Something tells me right around June 14 🙂
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[…] Here we are again, it’s the 23rd of May. In our house that means it’s D-day. D for diagnosis. Count them up and you have six. It’s shaky hands that type those words. Hands linked to a heart doing it’s best to be at ease, but still, honestly, struggling a little not to find the passage of time remarkable. Wanting to wake up on the 24th realising the 23rd passed without note. This isn’t the year for that. Rett is just unavoidably big. My friend Collen wrote earlier today in her blog… […]