Grace for Rett » Grace's Life with Rett Syndrome

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.


Mila - March 15, 2012 - 4:47 am

That explains some things. <3. I still think that Gracie is special within the special. Kind of like you are among the photographer mamarazzi. Very cute picture of the two of you. Thanks for the update.

Kelly - March 18, 2012 - 3:21 pm

Yep, You are right – falling in love with a rett girl is EASY and for life!!!

Dot McQueen - March 20, 2012 - 9:16 pm

So true!

I haven’t even met Grace and she has already stolen my heart.

SUSAN ELDRIDGE - July 28, 2012 - 6:16 pm

Hi, I have a daughter w/ RETT SYNDROME her name is Alexis she is almost 3 yrs old please contact me. I would like to get know you and share any ideas you might have.

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