Up the Down Staircase

A New Times writer tells one family's unique story about life with Down Syndrome, and then shares her own

My sister had another really good line when she heard about Sophie. She said, "Well, at least now Amy will always have someone to go get a pedicure with."

My husband and I are both journalists, both used to telling other people's stories. But neither of us had ever really had our own story, 'til Sophie.

Tyler's occupational therapist, Connie Ferrell, stimulates his mouth with a Nuk brush to help him learn how to chew better.
Tyler's occupational therapist, Connie Ferrell, stimulates his mouth with a Nuk brush to help him learn how to chew better.


Photographs by Peter Scanlon

We had opposite reactions. Even before the blood test confirmed the nurses' suspicions, my husband was in the hospital's medical library, learning everything he could about Down syndrome and then about Sophie's heart defect, when it turned out the doctor was wrong about that, too. (Boy, that doctor sucked.)

He didn't want to write about it, he just found information comforting, even if it wasn't what he wanted to hear. My husband knows so much about Down syndrome that he taught the genetics counselor a few things, when we finally got in to see one. Sophie was three months old. I sat through the session in a fog, barely focused on the wormlike chromosomes on the laminated sheet, as my husband rattled on about trisomy 21 and nondisjunctive Down syndrome.

I just wanted to know, would Sophie have curly hair like the rest of us? (Turns out, no.)

I'm not that shallow, really. If your kid had Down syndrome, I could research and write the heck out of your story. I'm not so good at science, but trust me, I could figure it all out and then write a way-too-long piece about it, packed with details. But when it came to Sophie, I was lost. Friends gave us books -- particularly Expecting Adam, written by a woman who lives here in Phoenix -- and my husband devoured them while I watched Baby Einstein videos with the kids and finished decorating the nursery.

I was totally cool with Sophie, as long as I was with her, taking care of her, making doctor appointments and going through the labyrinthine process of getting her therapy through the state. I could deal with whatever Sophie needed that day, but I couldn't think about the future at all.

I got pretty good, pretty fast, at finding Sophie what she needs. We met one family with a little boy with Down syndrome, and that mom was a great resource for doctors and therapists. But we didn't join the local support group. When Sophie was about two weeks old, a couple of work colleagues came over with one of those buckets of margarita mix and a bottle of wine. Okay, it was a Wednesday night, and I had just had a baby (not to mention a Percocet and a handful of Advil about an hour before), but we've always prided ourselves on a nontraditional lifestyle. I used to joke that Annabelle's first word would be "motherfucker." I wasn't far off.

We sat around the dining room table drinking and laughing, and the doorbell rang. My husband had forgotten to mention that he'd told Gina Johnson, the woman from the support group, that she could stop by. In his information-gathering zeal, my husband had called Gina. She was very encouraging and helpful. She wanted to meet us. She came in loaded down with books and a ceramic angel. Gina's grown son David has Down syndrome, and she showed us a big picture of him at the prom. ("Well," I said later to my husband, "you and I didn't go to our proms. That's something.")

I couldn't look at the picture of the sweet boy in the tuxedo, beaming next to the girl who probably felt sorry for him. When my drunk colleague announced to Gina (who happens to be a devout Mormon who says things like, "I want to smooch on your angel baby") that her own 15-year-old daughter was an "asshole," I did my best to end the evening there.

I was stuck. I didn't want to be with the touchy-feely support group people, but I felt uncomfortable around my usual crowd. And they felt awkward around me. My favorite story about that involves one of my favorite people, Laurie Notaro. You might have heard of her; she's written some books. In print, she's one of the meanest people I've ever known, and I love her for it. But how do you tell someone like that that your kid's messed up? When Sophie was a few days old, I called Laurie.

"Look, I have something to tell you," I said, after we'd dispensed with the pleasantries about oozing scars and gas pains. I took a deep breath. "Sophie has Down syndrome."

I was ready for the silence, then the voice filled with tears. "Oh, Amy," she said. "Oh. I am so sorry." More silence. We talked about Sophie's immediate health problems, then we talked about Laurie coming to visit. She wanted to know what I wanted from Barb's bakery. Then we hung up, pretty quickly.

I didn't think much of it. I'd had several of those conversations that week. To me, it wasn't inappropriate to express sorrow about Sophie. I was sorry, too. Worried about her health and whether she would have a happy life. Frankly, I was worried about whether I would have a happy life. I checked Laurie's name off the "to tell" list and made the next awkward call.

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