Chloe our precocious 4 year old and super sister just burst into the room as I sat reading. Out of breath she exclaimed, “Mommy, I’m working on teaching Claire because she’s ready to be done with Rett Syndrome” and she ran back off to her sister to resume their work.
I didn’t really know how to respond, I told her good job. I was in awe. How does her little mind know how important rehab medicine is? How does she know that she is equipped better than anyone to do this work with Claire. How does she know that Claire is ready to be done with Rett Syndrome?
It is possible that she hears a lot as we plan for our upcoming appointments in Boston. In 6 weeks, Claire will be enrolled in a clinical trial and will be receiving either the placebo or the treatment. More than that, Chloe listens to Claire like no one else. It’s hard to put into words, the mysterious sister bond that connects them.
Over the weekend Claire’s brain was ravaged by seizures. It took her several days to recover and today she is doing very well. Maybe this is what Chloe is referring to. Not the treatment, but that Claire is ready to play again, to laugh with her, to do the things that RTT doesn’t stop her from.
I suppose it doesn’t really matter and it’s likely I will never find out what exactly she meant in that moment. Her enthusiasm for helping her sister and the urgency that she approaches it with is a good reminder. As much as I try to make peace with it, to accept Claire so that it hurts less, at the end of the day, we are all ready to be done with it. Ready to be working on the getting better part.