More than 1,000 words

Claire_copyWhen Claire was diagnosed with Rett Syndrome we knew that she would loose skills. We didn’t know what and we didn’t know when. One of the things we did as a response to this was to get some good pictures taken of Claire being the little girl that she was, to celebrate her. We were able to connect with my good friends dad. He had photographed me in high school, took the pictures at our wedding and captured Claire as a healthy baby, before any of the crazy came into play. I struggle to remember much of the day we took the pictures, that season of life is mostly a blur. I look at the pictures and remember how she could sit so well, how she would reach for things, how she was curious as any little girl would be, how she was so full of life. I’ve been meaning to get more great pictures, to help us remember, but it’s been harder than you’d think. Part of me struggles to want to remember. I don’t want memories of the season when she was so mad and so angry that she cried and screamed every day. I don’t want to remember when seizures ravage her brain and when her bright light was suddenly dim. Then I feel guilty for not getting good pictures just in case we have her funeral (morbid I know, if you held somebody while they turn blue as often as I do it would make more sense) but I didn’t want to schedule pictures so we’d have them for the funeral, who does that. So for 5 years, there were no professional type pictures. Lots of memories captured with the iPhone but that’s been it. Then Christie, one of the amazing mom’s who has been guiding me through the land of the nuerotypicals offered to take some pictures at the park. Since it was sort of a playdate with pictures I didn’t freak out. As it turns out, she is a really amazing photographer and we had a great time. She took a few pictures and then we sat and enjoyed our picnic until the sun was down. It was a celebration. Not just of Claire and that she hasn’t died yet, but of our whole family, of where we are today. Once again, I am in awe as amazing people move in and help us out, glad I’m starting to leave room and thankful for the great friends we’ve got along with us on this journey.IMG_8975-1-960

6 thoughts on “More than 1,000 words

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