Of All the Things I Dream of Claire Saying, This Wasn’t It

I guess that I should have known this day was coming. In the past as Claire has sobbed after seething in anger, we have talked about how having Rett Syndrome isn’t fair. Today Claire has been saying “long” and “hard” over and over. It has been a sort of riddle that we have been trying to solve, what’s long, your hair, the holiday weekend. What is hard, uncooked carrots, your sister’s head. We weren’t getting a positive response on any of our guesses. Tonight at dinner we had a departure from the typical joking and silliness that Claire leads with her talker. It started with “long” “hard” then she added “live” and the light bulb went off in my head. Before I could say anything I else she said “bad”. I asked her if she was talking about having Rett Syndrome and she looked me in the eye and smiled her sweet smile. Yesterday we went to see neurology. I talked with the neuro about how we want to be aggressive in working with Claire because I believe that there will be a cure in 5 years. At that point Claire smiled and I casually commented to Claire about how maybe when it is time for her 10th birthday (she had been talking about her b-day with the doc) she won’t have to be bothered by Rett Syndrome any more. It has just killed me that since I told her that she has been telling me that she thinks that is a long time. As we talked about this her computer started to freak out and we had to reboot. Once it was back up I asked her some sort of question about being alright and she responded “do” which I took as a yes of sorts. Then she said “they will” to which I replied that they will find a cure. She then went on to tell me she was thirsty and that that I am slow and lazy like normal. It just kills me that all day she only said these two words as she was desperately trying to get what was on her heart across to me. On the other hand I am so grateful that we have this computer and that she had the release of saying that she thinks it is “bad” that she will have to wait so “long” and that it is “hard”. If I could only describe the look on her face when I explained how lucky she is to know that a cure is coming and that a long time ago (3 years, even less) girls didn’t know that there were doctors working on making a cure, but it was one of genuine concern for those girls. Yet again, Claire has used the perfect word to describe something that I so struggle to grasp “hard”.

3 thoughts on “Of All the Things I Dream of Claire Saying, This Wasn’t It

  1. Ouch. I'm in tears. I know our girls go through so much. I talked with a friend awhile back who was telling me about girls who can communicate and that what they say is usually very simple (because it's hard to communicate) and sometimes can be very dark – because these angels go through so much. You're an amazing mom! You are loving Claire through this and giving her hope for her cure! Hugs!!!

  2. tears here too! Along with a little motivation – we have sort of hit a wall with Brooklyns Dynavox. We just cant seem to get it set right or calibrated right…..it seems so frustrating for her….BUT I AM NOT GIVING UP..I know she has SO much to say to everyone! Thank you for the reminded today! I love you and Claire SO much!

  3. Wow. So glad she was able to express herself, but so sad all the same. Our girls have to go through so much. Reading your blog is always inspiring. What a wonderful job you do helping Claire use her new “voice”. Thanks for sharing.

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