The below poem was written by a young woman named Gaby Valner who has Rett Syndrome. She also has a blog and has been published in the huffingtonpost.com.
A Mind Comes to Light
From the foggy deep,
A mind chained and bound
Finds the light, a flickering dim glow.
To add to the infant flame
the mind uses kindling –
soon, a fluorescent glow burns bright.
From the foggy deep,
A mind emerges.
Her blog: http://gabyvalner.wordpress.com
The HuffPost article: http://www.huffingtonpost.com/gaby-valner/rett-syndrome_b_4394393.html
I’m filled with such hope, reading about this young woman’s life, her struggles, her joy. And it makes it feel that much more of an imperative to find the ‘perfect’ preschool for Lily.
I’ve toured one school so far – and have been blown away by it (not just because of their indoor sensory gym and location!). There are a few more tours coming up these next weeks… So many places are already full for September. Here’s a link to the school which is on the top of my list (for those interested!):
Fingers crossed that we are back in Manhattan in the fall!
We have another busy week ahead of us. Lily’s 3 year check up with the pediatrician is on Tuesday, the follow-up with her neurologist is on Thursday and the much-anticipated visit to the Rett Clinic is on Friday (which is likely to be a 3+ hour appointment).
This kid knows how to keep her momma busy.
The progress that Lily has been making lately is awesome. She’s so much stronger on her legs – she’s been running down the hall, pounding those little feet on the floor, while giggling. She’s dancing (even doing assisted spins!) and she’s so much more interested in her surroundings (you should have seen her face yesterday when we were driving home from New Jersey – she was mesmerized by all the lights, and especially the Holland Tunnel).
However, her ability to meaningfully use her hands is not going as great. It’s getting harder and harder for her to hold her bottle. But you should see her throw a ball, or spike a balloon. The pride she has on her face when we’re playing together is priceless. (I’m sure the pride on my face is priceless too!)
Here are a few photos of us from the past two days. Desiree (the nanny) and Hamida (the speech therapist) both called me out for dressing us in the same outfits. This was truly unintentional. But I am my father’s daughter after all.
C and L