Up until today, there were only three people – in the past 16 months – who understood the gravity of these words when I spoke them: ‘my daughter has Rett Syndrome’. Two were dear friends who happen to be doctors (though don’t assume that all doctors know what Rett is) and another had a close friend whose daughter has it.
Otherwise, I got a ‘um, wow. that sucks.’ or a ‘I don’t know what that is’ or – for the most part – I didn’t even get a response to an email when I was reaching out to someone to tell them.
I’m not upset at anyone about their lack of response. Rett Syndrome? Huh? What is that?
But today these words ‘my daughter has Rett Syndrome’ brought a stranger to tears.
I was sitting there watching Lily at her Sunday morning horseback-riding class in Prospect Park, proud that she wasn’t having a complete meltdown on the horse (she’s been known to totally lose it on Cinnamon, the sweetest, oldest horse I have ever seen) when a woman sitting next to me asked if the stables were close to Prospect Park. I told her that these stables are in Prospect Park!
I then asked her where she was from, as it was pretty obvious she wasn’t from Brooklyn. She’s from Long Island and came down to Brooklyn with her son to volunteer at GallopNYC through a program with JPMorgan, where she works.
We got to talking about corporate volunteer programs (which is something I know a lot about) and how grateful I was that she, and her teenage son, were here to volunteer to help kids and adults with disabilities ride horses.
Her son was one of the 5 people who were supporting Lily on Cinnamon that day.
So I began to tell her about Lily and I mentioned her Rett diagnosis. She grabbed my knee, started crying and said, ‘I had no idea.’
She was shocked – she couldn’t believe how well Lily was doing. This lovely woman then went on to tell me that she had a niece with Rett Syndrome. Eventually, she told me that she signed up to volunteer at GallopNYC to honor the memory of her sweet niece who recently passed away at 5 years old due to complications from Rett Syndrome (it sounds like it this sweetie had a very severe case).
I think this woman walked away from our conversation with hope – that Rett Syndrome isn’t always the prison sentence it’s made out to be. I walked away humbled, as always, by how well my kid is doing.
And it brought me to tears.
I just received Lily’s progress report from her amazing after-school therapist Elaine, who is a speech language pathologist and Tobii/PODD expert. Here are a few exerpts from the report:
blueberriesandgiggles 