3 New Symptoms of Rett Syndrome

In a few weeks, I’m heading out to photograph twins girls, one of whom is newly diagnosed with Rett. It’s funny how I’ve grown so used to Grace that she’s just…well…Grace. I don’t really see Rett Syndrome because we’ve lived with it since we’ve known her. But meeting other girls for the first time still gets me in the heart/gut. I get really nervous just because of the unknown. I also hate falling in love with these girls when every one we have come to love is always so far away that we don’t see them again for a year or more 🙁 Because of course, you always fall in love when you meet a new girl with Rett Syndrome! That should be on the list of symptoms:

  1. a tendency to steal {hearts}
  2. extreme levels of loveability
  3. high probability of lifelong attachment, even from one meeting {approach with extreme caution}

A couple of completely random updates about Grace:

  • Her surgery date came through and -wouldn’t ya know- they want to do it while Steven’s skiing in America. Fat chance I’ll be able to swing that one! New date coming soon.
  • She can now pretty consistently say ‘hiya’ when seeing someone. Takes up to 20 seconds for the gears to turn, but if you’re patient, she almost always says it.
  • She’s sitting up with very little support. I don’t know if she’ll ever do it alone, though, because she inevitably always throws herself backward.