posted Thursday October 6th, 2016
October is Down syndrome Awareness Month, so my Facebook feed is full of beautiful photos of kids with DS and wonderful explanations of Down syndrome. Lots of people are posting a popular short essay called “Welcome to Holland.” I’ll be honest. It’s not my favorite. Here’s why, in an excerpt from “My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome,” published this spring by Woodbine House.
Years ago, I interviewed a pediatric neurologist in Phoenix for a story I was writing about autism. He was a gentle older man confounded by the fact that the rate of diagnosis was rising; in contrast, my story was about parents who resist a diagnosis, who are in denial.
Before we dug into science and statistics, I explained to the doctor that I was intrigued by the way autism was diagnosed because I had a young daughter with Down syndrome—a question answered with a blood test at birth (or a diagnosis before that, even) as opposed to the never-ending questions surrounding an autism label. Autism can’t be diagnosed with a blood test, and not prenatally at all, and symptoms typically don’t appear or aren’t noted until the child is two or older.
And then actually testing for autism is a tricky proposition. In many ways, it’s like pornography—the medical profession knows it when it sees it. That’s not good enough for some parents, understandably.
It’s a tricky, complicated subject, and, at the time I was writing the story, it was frankly a welcome relief from thinking about Down syndrome 24/7. I didn’t mean to make Sophie more than a passing reference in my conversation with this busy physician. But as soon as he heard “Down syndrome,” the doctor was up and out of his chair, rushing out of the room and returning with a grin and a typed sheet that had obviously been Xeroxed many times. The words were hard to read, tilted and worn.
No matter, I’d already read “Welcome to Holland.” I smiled and thanked him and tucked the paper inside my notebook, trying not to cringe visibly. The short passage was written by Sesame Street’s Emily Kingsley in 1987 about her son Jason, who was then thirteen.
“I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this,” she begins.
Then Kingsley shares a metaphor that will later be used in the title of books, published all over the place, Xeroxed repeatedly and handed to parents like me.
It’s like you’ve planned a trip to Italy, Kinsley writes – but instead wind up in Holland. It’s still beautiful, it’s still amazing, but it’s different, disconcerting at first.
“The important thing is they haven’t taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It’s just a different place.
“So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you never would have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy.”
“If you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.”
I love Sesame Street, and I have nothing against Emily Kingsley. But I was never a fan of “Welcome to Holland.”
I’m sure many parents have found solace in what they see to be great insight. Not me. I’m not alone; in fact, there are entire online forums devoted to the hatred of this piece.
It’s sappy. It’s simplistic in a way that having a kid with disabilities is not and never will be, not for me anyway. And for a long time, I was still too hurt and angry for platitudes. Looking back now, I realize that part of what upset me was that it felt like this was all anyone was handing me – this comparison between these two places. I needed more.
Ray and I had been to both Italy and Holland before Sophie was born, and I didn’t need to be reminded of carefree trips to Europe at a time when I was quite sure my life had ended.
“You know, I’ve been to Amsterdam, and THIS IS NOT LIKE AMSTERDAM,” I said to Ray, waving the paper, gritting my teeth. “I don’t see hash bars or tulip fields or awesome flea markets in this scenario, do you?!”
He just made a face.
I knew I was supposed to fit into this new role as parent to a kid with a disability, but I didn’t know how to do that. Those moms were harried but tender, stoic and knowledgeable. They kept their hair short, drove light-colored mini vans, and always had a Wet Wipe ready. They were selfless, kind, and accepting. They did not wear make-up. I had the last one covered; other than that, I was fucked.
“You know, I’m not your typical special-needs mom,” I told a nanny candidate when Sophie was very young.
“Yeah, well, who is?” the confident young woman shot back—snarky but correct. I hired her, warily, and added my faux pas to a quickly growing list of things I was ashamed I’d said.
The truth is that I was watching my friends go somewhere while I was stuck someplace else, a place with medical scares, staring strangers, preschools that wouldn’t take my kid, sleepless nights worrying about her future—and mine.
I was drowning and I needed help.
(Gorgeous artwork above by the incredibly talented Monica Aissa Martinez. This is Sophie’s karyotype. Monica “mapped” Sophie this summer. More on that soon.)