Tuesday, October 7, 2014

Rett syndrome awareness month.



October is Rett Syndrome Awareness Month.  Edda's doing well - healthy (except for the Rett, if that makes any sense) and happy.  Edda often gets up at 4:30 am.  Usually one of us wakes up then and crawls into bed with Edda and cradles her back to sleep until a more reasonable 5:30 am.  We switch nights so I only get up super early every other day, but I've become so good at this that I can pretend I'm still sleeping when I walk over at 4:30 am and then go back to sleep promptly as soon as Edda's body curls around mine.  Since Jeremy's been traveling this week, I'm keeping Edda company every morning.  If I can't get her to go back to sleep, then I'll turn on a little TV on her dresser and she roams the room while I try to sleep some more.  This is when she'll often come back to the bed and sit on my head.   I do still hope for a cure for Rett, but as she gets older, it all seems to fade away.  It's as if I can't see it anymore, that the borders are fuzzy and I can never get it smack in the center of my field of view.  

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