My Heart Can’t Even Believe It

My Heart Can’t Even Believe It

My Heart Can't Believe It

By Amy Silverman

When my daughter Sophie was a few days old, the pediatrician scribbled a name on a prescription pad and handed it to me. A geneticist. When you have a baby with a genetic disorder, they send you to see a geneticist. I didn’t think to ask why. I figured this guy would look at Sophie—maybe test her blood—and tell us all kinds of things, like how smart she’d be and whether or not we’d have more kids with Down syndrome. Sort of like a fortune-teller.

It took four months to get an appointment, and by the time we got in, I’d already figured out that those questions don’t have answers. I really only had one question left for him: Do people with Down syndrome ever have curly hair?

In our house, hair is a big deal. Specifically, hair that curls. When Sophie’s older sister, Annabelle, was a few months old, her straight brown hair fell out and she was bald. For weeks afterward, my husband Ray and I watched her head carefully for signs of curls.

Perhaps Ray and I are so obsessed with hair because both of us had transformations when we learned to let our curly hair be curly. For me that happened my junior year in college, when I spent a semester in London and got a spiral perm—going to the other extreme from my previous hairdo, which had required hours with the blow-dryer, round brush, and iron. Okay, so with the perm I looked like Dee Snyder from the heavy metal band Twisted Sister, but that was stylish in the late 1980s, and finally, I felt good about myself. I dated cute boys all summer.

Ray won’t tell me exactly when his mother stopped blow-drying his curly hair straight. I asked once, and he got a funny look on his face and said, “You’re going to write about this, aren’t you? No way am I telling you anything.”

No matter. When I met Ray, he had dark, curly hair and everyone told us how cute it was that someday we’d have a little baby with curly hair.

We did. By the time I was pregnant with Sophie, Annabelle’s hair had grown in and she had a full head of perfect blonde ringlets. Old ladies in Target would stop me to ask if I used a curling iron on my two-year-old’s hair. No, just an entire bottle of No-More-Tangles. When Annabelle’s hair was wet, it stretched almost to her butt. She loved to shake her curls. She knew they made her special.

But what about Sophie—so tiny in her carrier, with straight black hair and a feeding tube up her nose, chromosomally challenged and days away from open-heart surgery?

Would her hair ever curl?

Years later, I still can’t believe the words came out of my mouth as we sat there in the geneticist’s office. From the look on his face, neither could he, a sweet older man with a booming practice and a packed schedule. In the time it took us to get in to see him, Ray had done his own homework on the topic of Down syndrome. His side of our bed was piled with books; more than once, I’d caught him staring at baby Sophie—silently sizing her up next to whatever new fact he’d just discovered, hesitant to tell me much.

Before the doctor joined us in the exam room, we met with a genetics counselor who gave us some history. “Down syndrome was first identified by a man named J. Langdon Down in the seventeenth or eighteenth century,” she began, reminding me of the public relations people who call newspaper reporters to pitch well-worn story ideas, practically singing them off a script.

“Actually,” Ray said gently, “It was 1866.” After that, Ray did the talking, and the genetics counselor took notes.

After Sophie was born and we got her diagnosis, Ray and I took very different approaches, which is weird, since he and I are both journalists, each of us in the habit of soaking everyone and everything for information on any given topic. Ray jumped into his research, but I retreated into the bliss of ignorance, particularly for those first fuzzy months of Sophie’s life. When I was a little girl—and even now, sometimes—when I’d hear a noise at night, I would pull the covers over my head, confident that if I couldn’t see it, it couldn’t hurt me. Ditto for adulthood. When I had the chance to take the tests while I was pregnant (and even when they told us there was a better than average chance Sophie had Down syndrome), I didn’t. And now that she was here, I still didn’t want to know. I didn’t want to know what was lurking around the corner, in the dark.

Instead I focused on the day to day. I decided I could only live with my baby and learn to love her and get her what she needed. And even though she was just four months old, she’d needed a lot, so far—a feeding tube, therapy three times a week. Echocardiograms, rows of pill bottles, a mini-hospital set up in the nursery. Scariest of all, a few days after this appointment with the geneticist, she was scheduled for open-heart surgery.

I survived by taking deep breaths and focusing only on the immediate. If Sophie wasn’t going to be like the rest of us, if she wasn’t going to be like Ray and Annabelle and me, that was okay. I just didn’t want to know about it in advance.

Except for Sophie’s hair. I wanted to know about her hair.

The day before Sophie was born, I had an ultrasound. The technician never saw the hole in her heart, but she pointed out my baby’s hair, floating in the amniotic fluid. It was beautiful.

And so was Sophie when she arrived, right down to her full head of straight hair. As lovely as it was, however, I won’t say her hair didn’t cause a pang. Selfishly, instinctively, I wanted her to be just like us. And so, I wanted her to have curls. Not the kind you get from a perm or an iron, but real curls—snaggled-at-the-back-of-the-neck, need-to-be-coaxed-with-conditioner, on-the-verge-of-dreadlocks, don’t-touch-I’m-in-the-critical-drying-stage curls.

As we sat in the geneticist’s office that day, I had yet to read any of the books or surf the websites or talk to the parents whose names we were given regularly, but somehow I knew before I asked that Sophie’s hair would never curl, and I knew that there were so many things about Ray and me that I already saw in Annabelle that I’d never see in Sophie.

The doctor stared at me. Then he explained that people with Down syndrome do not have curly hair. “African-American hair might wave a little,” he said, “but otherwise, no.”

(It’s true that over the years since, I have encountered a few people with Down syndrome and curly hair – but it’s most definitely the exception to the rule.)

Sophie would never have curly hair. I have to admit that I felt a little cocky for having figured it out—but mostly, I just felt sad. And dizzy, both literally and figuratively. Having this baby hadn’t just thrown me off kilter; it had knocked me over and I couldn’t figure out how to get up. Not that you’d have known by looking at me. (I don’t think so, anyway.) I was going through all the paces that a new mother takes, feeding Sophie, clothing her, rocking her, keeping her alive. Cooing at appropriate moments. But I didn’t feel like she was mine.

And now it felt like she’d never be. The hair was a symbol of all the ways she would continue to be different from us. She wouldn’t love the books I loved, wouldn’t “get” subtitled art house movies or defend socialism to a roomful of capitalists, and she’d never have curly hair. I looked down at her, strapped carefully into her carrier in her sweet pink-and-white onesie with her straight hair, and knew what I had to do. There was no other option. I picked up the infant carrier with this foreign creature inside, and we went home.

This excerpt is from My Heart Can’t Even Believe It: A Story of Science, Love, and Down Syndrome (Woodbine House 2016).

Amy Silverman is managing editor at Phoenix New Times and a commentator for KJZZ, the National Public Radio affiliate in Phoenix. Her work has also appeared on This American Life and in The New York Times. Amy holds a master’s degree in journalism from Columbia University. She lives in Arizona with her husband Ray and daughters Annabelle and Sophie.





Lucky Day

Lucky Day

WO Lucky Day ArtBy Amy Silverman

One morning not long ago, I found myself in the bathroom with my 10-year-old daughter, Sophie.

This is not an uncommon occurrence. We live in Tempe, Arizona, in an old house with screened porches and original hardwood floors, but only one bathroom you’d want to spend any amount of time in, and let’s just say its charm is limited. I’m pretty sure that if you tugged too hard on the soap dish in the bathtub, the entire house would come down.


But it’s all we’ve got, and my husband Ray affectionately refers to it as the “his and hers and hers and hers bathroom.”

As our daughters have gotten older, Ray’s bathroom time has shrunk considerably. Our little girls are growing up.

Well, one of them is. At nearly 13, Annabelle is a ballerina, petite and poised; she leaves behind a trail of hair nets, nail polish bottles and Instagram photos, and is appropriately modest about her changing body.

Sophie’s a little more complicated. She has Down syndrome, an extra 21st chromosome that affects every bit of her. From her straight hair to her oddly shaped toes, Sophie doesn’t look like the rest of us. I have heard that sometimes kids with Down syndrome go through puberty early. That is not the case, so far, with Sophie. She’ll soon be 11 and shows no physical signs of change.

She’s not very happy about that.

So there we were, Sophie and me, together in the bathroom one morning before school. We both needed showers, and she was up first. I turned on the water, then turned to Sophie.  Much like getting Sophie to put on her shoes, or eat her dinner, or give me back the iPhone she’s snagged, this task – getting her into the shower – required a serious game plan.

I cajoled and bargained her out of her clothes, and was insisting that no, taking a shower did not deserve the reward of a shopping spree at Barnes and Noble, when Sophie stopped, grinned and held up one arm.

“I have armpit hair!” she insisted. “Feel it!”

“Oh, yeah, sure,” I said, running my fingers along her armpit, distracted by the clock and the day’s long “to do” list.

“Hey, Sophie, I’m sorry,” I said, pulling my hand back and tuning in to the conversation. “I don’t feel any armpit hair. You’ll get it, but you don’t have it yet.”

Her eyes welled with tears, her naked little chest started to heave.

Shit! I thought. At this rate, we’ll never get to school.

“I know!” I said. “Let’s check and see if you have any hair – you know where.”

“Okay!” she said, super excited.

I crouched down and squinted hard, standing up straight to report my findings.  A white lie wouldn’t really hurt, right? We couldn’t afford another tardy at school.

“I see some!” I said.

You would have thought I’d told the kid we were going to live at Disneyland. She jumped up and down, squealing, her entire body shaking with the kind of pure joy most of us are lucky enough to experience once or twice in lifetime, and announced,


It was my lucky day the day Sophie was born, though I certainly didn’t know that then. Before Sophie, I’d never met another person with Down syndrome and had no idea what it meant, other than that this was going to seriously fuck things up. When Sophie was about two weeks old, I suddenly remembered something that made my stomach fall to my ankles: Pink Slip.

In the early 1990s, there was a VHS tape that made the rounds at certain parties in Phoenix. Ray and I had both seen it. Known as “Pink Slip,” it was an instructional video about menstruation from the 1960s or 70s, the kind the school nurse showed, but different because this one was geared toward a girl who was “slow.” That’s all I thought of her as – slow. It wasn’t until Sophie was an infant and I went back and watched the video on YouTube that I realized that, like Sophie, this girl had Down syndrome.

Since she was “slow,” it took a lot of extra explanation to teach this girl, Jill, about her period. In fact, in the video, the entire family gets in on the act. Mom and sister Susie show Jill a big calendar and explain (again and again – and again) that “every 28 days, blood will come out from an opening between your legs for three or four days.”   We all thought it was hilarious. At least, I thought we all did. I know I did, a fact I owned unhappily the day I made the connection between Sophie and Pink Slip.

“I’m going to have to show that video to Sophie someday,” I thought, wincing.

Ten years later, I realized it was time to teach her about puberty. I didn’t know what I was going to do about it, but I did know one thing: No way was “Pink Slip” going to be the way Sophie learned about her period.

There had to be a better way, something less condescending. Something that hadn’t made the rounds at parties – and now on the Internet – as a big, fat joke.  So when the local Down syndrome support group sent out an email advertising a puberty workshop, I signed us up.

The workshop, led by the foremost authority on Down syndrome and puberty, was split into two parts. The first day was for parents only, with a Power Point presentation and hand outs about how to teach a developmentally disabled young person about puberty. The plan was to come back the next day and separate into two groups, boys and girls, for The Talk.

“So tomorrow,” the speaker said as we were wrapping things up on the first day, “I will be showing a video about menstruation. It’s pretty out dated, I know you’ll all laugh at it, but it’s – “

I raised my hand.

“Yes?” she asked.

“Pink Slip,” was all I could get out. Ray was staring shut-the-fuck-up daggers at me.

“Oh no,” she said. “That’s not the name. I don’t recall it at the moment. You’ll love this one. It’s about two sisters -“

“Jill and Susie,” I said, my face hot.

“Well, yes,” the instructor said. “But it’s not called “Pink Slip.””

Oh God, I thought. It has a street name.

“Yes it is,” I said.

“How do you know about it?” she asked.

“Let’s talk after class,” I said.

“Okay, here’s the thing,” I told her after class. “I’m not proud of this, but we used to watch that video at parties and laugh.”

Ray chimed in: “I never thought it was funny.”

Thanks, Ray.

The next day, Sophie and I showed up for the girls-only meeting. We talked about safety and crushes and the girls went into the bathroom to try on pads. When the instructor drew a girl’s figure on the board and asked everyone to add a body part, Sophie added a bra.

When it came time for the video, the foremost authority on Down syndrome and puberty gave me a funny look then showed something else. Not “Pink Slip,” but instead an innocuous, modern, dumbed down explanation about getting your period.

Since the workshop, Sophie has been obsessed with puberty. And so in the morning, when she’s procrastinating, I find myself agreeing to let her wear deodorant – which she doesn’t need – if she brushes her hair first.  Mascara if she takes her thyroid medicine. And always, a bra from her collection.

The other day, Sophie was about to get in the shower when she announced, “I got my period yesterday!”

“You got your what?!” I sputtered.

“My period!” she said.

“Well, okay,” I said. “Here’s the deal. If you really got your period, then there would be blood on your underwear.”

We both looked down at her crumpled Barbie panties on the floor and lunged for them at the same time. A spirited game of keep away ensued.

I held the stain-free panties aloft, victorious.

“I really did get it!” Sophie said.

“You didn’t get it yet, but you will – soon,” I said. “I promise. Now get in the shower.”

Sophie climbed carefully into the tub. I adjusted the temperature of the water, secured the shower curtain, made sure she could reach the No More Tears shampoo. As I walked down the hall to my bedroom, I could hear her singing her ABCs and was reminded that, despite the bra collection and the hair obsession, Sophie is still a very young girl. And on so many levels, despite what happens to her body, she is destined to stay that way.

Amy Silverman is managing editor of Phoenix New Times. Her work has appeared in The New York Times, Washington Post, on the radio show This American Life and on She co-teaches the workshop Mothers Who Write and blogs at Girl in a Party Hat []. Amy lives with her husband and children in Tempe, Arizona.

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