Maya was my first real friend who also happened to have a kid with Down syndrome, made difficult but not impossible by the fact that she lived on the other side of the country. And we’d never met.
We found one another’s blogs many years ago, when our kids (her son, my daughter) were barely past the toddler stage (which, remember, happens a little later with kids with Down syndrome). This summer, Leo turns 13. Sophie is 14. And yes, we’ve spent a lot of time texting, emailing, and commenting on one another’s blogs (she calls it “blogging on your blog”) about our kids, about what it means to have an intellectual disability in a world that expects perfection.
But life is never about just one thing, even if that thing looms large and important and keeps you up nights. Maya and I have spent just as much time discussing the relative merits of the musical Rent, and our shared obsession with E.B. White, as we have Down syndrome. Also: how to make a rainbow layer cake. When I mentioned years ago that Sophie’s older sister Annabelle was making a zoetrope for the school science fair, Maya took note and a few days later, a book about zoetropes — written by Maya’s dad! — arrived in the mail. I’ve sent her the girls’ hand-me-downs, particularly if they include rick rack trim (a shared obsession).
Even when we’ve gone months without speaking — life gets in the way — I love knowing Maya’s there, that I can text her about an issue Sophie’s having with friends or a question about where she found bottle brush trees in that photo on Instagram (we are both Jewish but both love Christmas).
Having a kid with Down syndrome shakes the normal out of your life. Having a friend like Maya helps to put it back in.
Maya and I went to the same grad school, studied the same thing, had a lot of the same aspirations. We both went into journalism. We both dreamed of living in New York City. I ran screaming home to Arizona a couple days after graduation. She stayed, and eventually we both settled in the suburbs — although from hers, on one tall hill, you can actually catch a view of Manhattan.
I got to see that view earlier this month, when I took the train out to New Jersey for the afternoon. Maya and I had met a couple of times over the years, but never on home turf. Earlier in the week I’d hunted down the house on the Upper East Side of Manhattan that supposedly offered inspiration for the book “Harriet the Spy,” and this felt a tiny bit like that. I had context, I could now picture Maya in the kitchen making that rainbow layer cake.
And I got to attend the 4th Grade New Jersey Fair at Leo’s younger sister Ellie’s school. Each of the kids dressed up like a native New Jerseyite (there was Bruce Willis, Buddy from Carlo’s Bakery, even a tiny Dorothy Parker complete with pearls and a flask!) and Ellie chose Judy Blume, a particular moment of pride for her mom.
“Oh look, I think she’s wearing a shirt from you,” Maya stage whispered as we took our seats to hear the kids sing. Afterward, as Maya had promised, there was a cake shaped like the state of New Jersey. We cracked up. We also took a walk in a beautiful nature preserve — one of Maya’s favorite spots — and talked about family and our kids and how scared we are about the future. I remember when we met and we’d sweat over kindergarten placement or physical challenges, and parents of older kids would say, “Just wait.” I get what they mean. The ante is upped. In fundamental ways, things are not getting easier as the kids are getting older. I’m grateful to know Maya’s there, just a text away.
And equally grateful to know that she’s there for the rest of the stuff, too — for what it’s like to raise “typical” kids, to discuss kitchen cabinet color choices and vegetable gardens and peonies and everything else in between.
Amy Silverman is a writer, editor, teacher and — most important — mother. Her daughter Sophie has Down syndrome. Sophie is 13 and fully mainstreamed in the eighth grade in a public school in Tempe, Arizona, where she lives with Amy, her father Ray and big sister Annabelle, 15. Sophie is a cheerleader — both at school and with Special Olympics. She also studies ballet and drama and has appeared in performances with Center Dance Ensemble and Detour Company Theatre.
For many years, Amy has explored what it means to have Down syndrome in the 21st Century on her blog, girlinapartyhat.com. Amy has also written about Sophie (and a lot of other things) for New Times, the alternative newsweekly in Phoenix, where she is managing editor. In addition, Amy’s a contributor to KJZZ, the National Public Radio affiliate in Phoenix, and her work has appeared on the radio show This American Life, in the New York Times, Washington Post, salon.com and many other places. She co-teaches the long running workshop Mothers Who Write and co-curates a live reading series, Bar Flies, both in Phoenix. Amy’s first book, “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” was published in Spring 2016 by Woodbine House. To learn more, visit myheartcantevenbelieveit.com