“The results came back,” Sally said.
I’d just gotten home, and was still holding the nylon gym bag I’d carried to the hospital the day previously, for my night on call—shaving kit, clean socks, clean underwear. I tried to keep my voice and face neutral. “And?”
“Normal.” She stepped toward me.
I dropped my call bag on the kitchen table and spread my arms for a hug.
She put her cheek on my shoulder, and wrapped her arms around me. Her small frame felt solid.
I’d hoped to feel happy, or at least relieved, but I still felt as if my insides were being pulled downward. I was glad to know the results were normal—but so many things could still go wrong over the next seven months, and during delivery, and during the first few weeks of life. I kissed the top of Sally’s head.
We lived a few blocks from the main street of Westview, a small township just north of Pittsburgh. We decided to walk to a local restaurant to celebrate, and took turns pushing Sarah’s stroller. Cars were nosed into angled parking spaces in front of Westview Borough City Hall. We strolled past Isaly’s Deli, and then further down the steep hill, to DiPietro’s Ristorante.
We sat in a booth.
“I feel better,” Sally said. She took a sip of ice water. “Knowing.”
“Me too.”
Sarah was in a child’s seat, pulled close to the table. She looked from Sally to me, and back to Sally.
The waitress brought our salads. Wedges of iceberg lettuce, pale hard tomato slices. Thousand island dressing, thick and pink. Two packets of Captain’s Wafer crackers. I tore off the cellophane and handed a cracker to Sarah.
She took it, turned her head sideways, and started chewing. She was three years old. Developmentally about two or three, depending on which test was performed.
“You okay?” Sally asked.
“Tired,” I said.
Sally handed Sarah a sippy cup. Sarah casually put it to her lips and took a sip. She put it on the table without spilling a drop.
“Good job!” Sally and I said simultaneously. We then laughed at having said the exact same thing.
Sarah laughed along, and then smiled at me, and then at Sally. She finished her cracker.
We ate our salads. The pizza came, and I trimmed off a wedge of crust and gave it to Sarah. She held it in her fat little fist, and chewed. We talked about my night on call. About Sally and Sarah’s day.
On the walk back home, I asked if our new baby was a boy or a girl.
“Boy,” Sally said.
Sally’s body changed with the second pregnancy in the same ways it had with the first: her breasts and belly swelling, her gait developing an indolent sway. Making love, we accommodated the new geometries of curve and angle with the same adjustments we discovered the first time, but this time we felt less adventuresome, and more tender.
The C-section went without a hitch, and we named the baby John.
“He has a faint heart murmur,” the obstetrician told us in the recovery room.
Here we go. My belly muscles tightened.
Sally lifted her head from the pillow to look at the doctor. Her face was puffy and pale.
“I went ahead and ordered an echo,” he said.
Sally kept her voice level. “Anything else?”
“Nope,” he said. “Everything else looks good.”
Sally rested her head on the pillow, and folded her hands over her chest with her fingers interlaced. She closed her eyes.
I pulled my chair closer to her bed.
Later that day Dr. Swenson, a cardiologist, came by the hospital room. Sally was resting with her eyes closed. “The echo’s normal,” the cardiologist whispered. “Thought you’d want to know as soon as possible.”
“Thanks,” I whispered back. “I’ll tell Sally when she wakes up.”
He gave me a thumbs-up, and left.
Sally opened her eyes. “I heard.”
We took John home from the hospital, emptied a dresser drawer, padded it with folded bath towels, and used it for his bed. Over the previous months, I’d been looking at woodworking plans for cradles. I would enjoy using hand tools—saw, plane, and chisels—to shape the wood that would hold my sleeping son. I could adapt a Shaker design: something solid and simple in walnut or oak. John could someday rock his children in the same bed. But I hadn’t made a cradle for Sarah—I didn’t have access to a shop in married student housing—so we’d bought a crib. Sarah was still sleeping in it. In our house in Pittsburgh, I had a small shop in the basement. A cradle would be a great project: small, and simple, it would be easy to complete. But for something so straightforward, the project seemed complicated. If I made it, it would become a family heirloom to pass down to future children. Children that John could have, but Sarah couldn’t.
By the time John had outgrown his drawer, Sarah was able to sleep in a bed, and John moved into the store-bought crib.
When John was two years old and Sarah was six, Sally said she’d like to have a third child, followed by a tubal ligation. We didn’t even discuss whether or not we’d do chorionic villus sampling. When she got pregnant, it came back normal.
I’d finished my residency training, and was junior faculty at the East Carolina University School of Medicine. Publishing papers, teaching residents. We bought a two-story frame house in an upper-middle-class neighborhood with tall pine trees and carefully mowed, very green yards.
Sam’s C-section was routine, and he was healthy. When Sam was nine months old, we moved to Durham, North Carolina, where I was starting a new job in an ER. I was ready to be just a doc in an ER, instead of a professor of emergency medicine; I never learned how to say no to work, and at the university, between working my shifts on clinical duty in the ER and lectures, and meetings, and research projects, I could go twenty-five days in a row without taking a single day off. I was worn out, and just wanted to work my shifts and go home. I was ready to be free from worries about a career, about advancing up the hierarchy of academics.
Sally got a part-time job at the Duke University Chromosomal Clinic. She was a parent liaison between the clinicians and the families of the patients, most of whom had Down syndrome. She also stayed in contact with the genetics program at UNC in Chapel Hill, where Sarah was born.
Occasionally, medical students and pediatric residents from UNC who were interested in Down syndrome and other developmental delays came to our house for dinner to observe a family with a child with special needs.
“There’s a couple that may want to come by,” Sally said one evening. “They’ve got three kids, all girls, and are pregnant with a fourth. Down syndrome. Boy.” Sam was two, John was four, and Sarah was eight.
I put down the magazine I’d been reading. “Who are they?”
“I don’t know,” Sally said. “Elaine asked if she could give the couple our name and phone number. He’s an ER doc, she’s a nurse.”
“Huh,” I said. “An ER doc and a nurse. Sure. I guess so.”
Sally waited to see if I had more to say.
“Does it seem a little strange?” I asked. It was as if Sarah was a car they wanted to test-drive.
“Not really,” Sally said, holding her place in her book. “And they may not even call. Elaine was just asking if she could give them our number, in case they do want to meet Sarah. But if you’re not comfortable with it, I’ll just tell her no.”
Ten years later, in 2007, the American College of Obstetrics and Gynecology would make new recommendations: that prenatal testing for Down syndrome be offered to all women, regardless of age. Prior to these recommendations, only women thirty-five and older were routinely tested. Of the women whose tests identified a fetus with Down syndrome, 90 percent had an abortion.
The New York Times reported this in an article about a new movement in the Down syndrome community, in which families with a child with Down syndrome offer to meet with couples with a prenatal diagnosis of Down syndrome.
“The parent ‘evangelists’ are driven by a deep-seated fear for their children’s well-being in a world where there are fewer people like them . . .” The article goes on to say:
the richness of their children’s lives, parent advocates say, is poorly understood. Early medical intervention and new expertise in infant heart surgery stave off many health problems; legally mandated inclusion in public schools has created opportunities for friendship and fostered broader social awareness of the condition.
Many participants in the ad-hoc movement describe themselves as pro-choice. Yet some see themselves as society’s first line of defense against a use of genetic technology that can border on eugenics. “For me, it’s just faces disappearing,” said a mother to four daughters including one with Down syndrome, “It isn’t about abortion politics or religion, it’s a pure ethical question.”44
Even after reading it several times, I didn’t quite understand the distinctions being made between abortion politics, and religion, and a purely ethical question.
But in 1997, Sally and I were not part of a movement. We were just parents of a daughter with Down syndrome, and we’d heard about a couple facing a difficult decision. If having a beer and a burger with them would help, why not?
Their van pulled up at 5:02. Our house was on a corner lot in a tree-shaded neighborhood built in the 1920s. The side street, just half a block long, had never been paved. The sides of the ditch between our yard and the gravel of the road had a fairly steep slope.
James pulled their van into the side street with the passenger side wheels right at the edge of the ditch. Sally and I walked out to greet them.
Sally, James, Elise, and I all shook hands.
The girls clustered behind their mother’s legs.
“Why so shy all of a sudden?” Elise said. She stepped aside and introduced each of the girls. They were three, five, and seven.
“There’s a playhouse out back,” I said, “and a dogwood tree that’s great for climbing.”
The girls looked up at their mom. “Let’s go see it,” she said.
“We’ll go through the house,” Sally said, “grab the Austin kids.”
James and I followed.
Five days after the article in the New York Times, Eunice Kennedy Shriver, the founder of Special Olympics, wrote an article for America: The National Catholic Weekly about the American College of Obstetrics and Gynecology’s recommendations that all pregnant women be offered prenatal testing for Down syndrome. “When Down syndrome is identified during pregnancy, however, the pregnancy termination rate grows to an estimated 90 percent, which leaves those of us who know and work with children with Down syndrome outraged about the effects of prenatal testing.”45
John, six, and Sam, four, climbed the lower branches of an old, gnarled dogwood tree, glancing from time to time at the three girls, who were in the playhouse. I had built it a couple of years previously. It was four feet wide, eight feet long, and eight feet high, with large cutouts for the windows and door. One of the girls looked out of a window. She was wearing a red plastic fireman’s hat.
“Where’s Sarah?” I asked Sally.
“She’s in her room, coloring,” Sally said. “She’ll be down later.”
James and Elise smiled at each other, and then at us. They’d driven an hour and a half to get to our house, and I imagined they were eager to meet Sarah.
The four of us sat in lawn chairs, sipping Corona beer. James and I talked about the emergency departments we worked in. His ER saw 55,000 patients a year, mine saw 50,000. About the same mix of trauma and medicine, pediatric and adult.
Sally took Elise inside for a tour of the house, and later returned with Sarah.
“Show James your drawings,” Sally said.
Sarah handed him the piece of paper.
“Who is it?”
“Snow White,” she answered. “With the dwarves.”
“Who?” James said, leaning forward, smiling.
“Snow White. And the dwarves.”
James glanced up at me.
“Snow White?” I said to Sarah, looking at the drawing in James’s hand. “And the dwarves?”
Sarah nodded.
“That’s who I thought it was,” James said. “Very good.”
“Thanks.” Sarah looked over at Sam and John standing side by side on a limb of the dogwood tree, and then to the playhouse.
“Would you like to meet my girls?” Elise said.
“That’s okay,” Sarah said. She sat on Sally’s lap.
“Sarah draws a lot,” Sally said.
“Our girls like to draw, too,” Elise said.
“What’s for supper?” Sarah asked.
“Big-Daddy special hamburgers,” I said.
“Oh, brother.” Sarah rolled her eyes. “Here we go again.” She looked over to Elise. “My dad’s a big jokester.”
Elise and James chuckled.
“Can I go back and draw?” Sarah asked Sally.
Sarah looked at her brothers in the dogwood tree again, and at the girls in the playhouse, and then went back inside.
“Her drawings have so many details,” Elise said.
The people in Sarah’s drawings tended to be tall, thin, and made almost exclusively of elongated ovals. Snow White was holding a large, round red apple. The dwarves were all skinny, about half as tall as Snow White. The elves had hats, and pointy shoes that curled up at the toes.
“She can be shy,” I said, wishing she’d wanted to play with the other kids. “But that’s okay with us. One of the stereotypes is that ‘children with Down syndrome love everybody.’ We aren’t against love or anything, but we’re glad she doesn’t run up and hug random strangers.”
“She seems mature,” James said. “Engaging.”
“Our OB doc told us she’d be more like other kids than unlike them,” I said. “It’s been true in Sarah’s case. She’s a good kid. But the Down syndrome has put some stress on the family.”
“I guess all kids do,” James said.
The New York Times article didn’t mention the legal risk an obstetrician runs by not offering prenatal testing. In June 2007, in the journal Clinics in Perinatology, two attorney/physicians wrote, “The usual claim against a physician or other provider is not that of causing damage or disease in the fetus but of causing a loss of opportunity to prevent conception or live birth of an infant who has an abnormality.”46
Like most parents of children with disabilities, I will always be grateful to Eunice Kennedy Shriver for starting Special Olympics. She gave us the chance to watch our children run and play, without the wincing fear that someone will laugh at their awkwardness or slow reflexes. Special Olympics brought our children out into the sun.
But after reading her article on the issues of prenatal testing, I didn’t feel the outrage she wrote about. What I felt was more of an ache.
Sally and I walked Elise, James, and their kids to the van. After everyone was seatbelted in, James started the van and put it in gear. The back tire at the edge of the ditch spun, cutting through the thatch of grass and into red clay underneath. He backed up and tried again. More spinning, grass and red mud spraying backward from underneath the tire.
“I can give you a pull,” I said, pointing to my pickup truck. “Wouldn’t take a second.”
He rolled down his window. “I think I can make it.” The tire spun and the van slowly moved forward until the tires made it up to the gravel.
“They seemed nice enough,” I said as I rinsed a plate and put it the dishwasher.
“They’ve got a lot on their minds.” Sally stretched a piece of clear plastic wrap over a plate of tomato slices.
“Do they think they’re going to keep it?”
“She’s thinking not.”
“What’s he thinking?” I rinsed a plate.
“He really wants a son,” Sally said, “and it’s a boy.”
“Hard decision,” I said.
“She’s concerned that he doesn’t have a realistic idea of what a child with Down syndrome would involve.”
“Seemed realistic enough.”
“He has some depression,” Sally said, closing the refrigerator door. “She doesn’t think he’d do well.”
I walked out into the side yard and looked at the long red gash down the side of the ditch. The rut was four inches deep, and the edge had a ridge about three inches tall. I pressed my foot down on the edge, feeling it give under my weight, and thought about getting a shovel to try to smooth it all out.