posted Saturday March 21st, 2015
Today is World Down Syndrome Day.
All week long, my Facebook feed has been filled with posts by devoted, prepared parents going to their kids’ schools to educate others about DS. They are bringing blue and yellow (the official Down syndrome colors, I’m not sure why) iced cookies, wearing blue and yellow tutus, printing tee shirts, hanging giant banners in their communities and otherwise doing an amazing job of educating others about the most common genetic disorder, Trisomy 21, in which a baby is born with a third 21st chromosome. (Today is March 21 — get it? 3/21.)
It’s a lot of pressure. One day, the entire world. Too much.
Or is it that it’s not enough? Everyone and everything has an official “day” these days (when I signed on to Facebook this morning a friend had declared it “International Eat Ice Cream for Breakfast Day” and for a minute, she got me). I know it’s important (things like Down syndrome, not things like ice cream, though the people who market the stuff would tell you it’s very important) but all these days have put me in a daze. I’m kind of done.
But I’m not done with Down syndrome.
In our house, every day is World Down Syndrome Day — whether we like it our not. (And don’t worry, we love it almost all the time.) One thing I’ve learned in Sophie’s almost 12 years is that when you have a kid with Down syndrome, the process of educating others (and yourself) is constant — as it is with any kid, but particularly with one who comes with a set of sometimes unusual behaviors and characteristics.
And sometimes, the best education comes when Down syndrome isn’t even mentioned at all. We spent several days during Spring Break in New Orleans, and I saw just about everything in the French Quarter — except for another person with Down syndrome. You might consider that a good thing given the debauchery of the place (and we saw some of that, too) but it made me sad. Hundreds, thousands of people enjoying wedding parades, brass bands, beignets. Where are the people with DS? It’s a question I’ve asked before when we’ve traveled with Sophie. (Disneyland is the grand exception.)
I don’t think I heard any of us or anyone else utter the words “Down syndrome” the whole weekend, but Sophie offered her own lessons by engaging with shopkeepers and servers, other tourists, the startled clerk at the front desk of our hotel. Unable to contain herself, she stepped out in front of a band playing in Jackson Square and rocked her best dance moves, earning cheers and a $20 tip from another dancer. All night long, all over the French Quarter, people stopped us to ask, “Is she yours?” And to say, “She’s amazing.”
“She is,” I wanted to say. “And you know she has Down syndrome, right? You know what that means?” Instead, I just smiled and said thanks.
It’s a 365-day-a-year education process, whether you have ALS, use a wheelchair, or have DS. That’s something I want to acknowledge today, for all of us, not just those who have a kid with Down syndrome. As a wise friend once said to me, “We all have something.”
That said, I have to admit that I’m a little jealous of all the blue and yellow today. I do love a reason to celebrate. As luck would have it, Sophie’s friend Tatum (who also happens to have DS) is spending the night tonight. I might have to make a cake.