The afternoon sun angled through the window of our apartment’s living room in married student housing. Sally sat on a rattan couch, with Sarah at her breast. Sarah was making contented sounds. The cinderblock walls, painted a glossy white, reflected the midwinter light. The yellow cushions of the couch seemed to glow in the incandescent light from the lamp next to Sally. A framed poster by Van Gogh hung on the wall—a row of farmhouses, blue and white, with thatched roofs, lined up against a yellow sky.
Our apartment consisted of a kitchenette with a Formica counter and glossy white plywood cabinets, two small bedrooms, and a tiny bath. Steel door frames and casement windows. The floors—brown linoleum tiles over concrete—felt chilly to bare feet, summer and winter. The corners of the tiles curled slightly in the area under the living room window.
On the kitchen windowsill, Sally had perched three small terracotta pots: a bulbous emerald rubber plant, another plant with green and red variegations, and one with leaves like tiny elephant ears. In the sink was a plastic bathing tub, ergonomically shaped to hold a baby in a seated, reclining position. Sarah looked like a fleshy little astronaut, splashing and laughing. The kitchen smelled of baby shampoo. After her bath, Sally wrapped her in a white terrycloth drying blanket with a triangular pocket sewn into the corner, embroidered with a mouse’s eyes and nose, and with small yellow ears with blue piping at the edges. The pocket functioned as a hat, and Sarah was damp on Sally’s shoulder, the top of her head covered with the mouse’s face, the ears sticking up. Sarah’s eyes were bright—such delight in a bath, in a terrycloth blanket.
Sarah’s room had a crib and a wooden tool chest I had made when I was a carpenter in my midtwenties. It was four and a half feet long, and two feet wide. With a two-inch foam pad that Sally had covered with blue Naugahyde; it was the perfect height for a changing table. I cleaned Sarah, put her in fresh, dry diapers. With her tummy full and her diapers dry, she seemed content. I laid her in her crib, and touched the mobile clamped to the side rail. She watched the tiny pastel elephants making slow and bobbing circles above her head.
Back in our room, the sheets were crumpled and warm, and there was a fine scrim of frost on the windows. Sally tucked an absorbent disk of cotton in her bra, nestling it against her nipple. After five months of breastfeeding, Sally’s movements were deft and routine. Her bras had always been colorful, wispy things: her breasts compact, not requiring the industrial truss work of heavier cup sizes. Now she wore stiff, white, functional bras, with wide straps and multiple hooks, designed for heft and support.
“I can take her for a walk,” I said. “Let you sleep in.”
“Thanks.” Sally yawned and stretched her arms. “That would be great.” She scrunched down into bed and pulled the comforter over her shoulders. “Everything should be in the diaper bag.” As a fourth-year medical student, I was doing rotations in the hospital, and it was a rare and happy occasion to have a weekend in which I wasn’t on call either day.
When we were inside the apartment, I noticed the delight on Sarah’s face more than the slant of her eyes. She and Sally and I were our own little family. We laughed with Sarah as she splashed the water in the tub, or after she had fed and let loose a raspy belch. At five months old, Sarah could hold her head up when she was lying on her belly, and could sit propped up against the yellow cushions on the couch in her blue and white striped OshKosh engineer’s bibs. She laughed easily, and was always glad to see me or Sally.
But when I stepped outside our home with Sarah, I felt that I needed to arrange my face: keep my lips pulled up in an unchanging smile, in preparation for well-meaning comments and innocent questions that people might have. More often than not, people didn’t even notice us, but I still felt as if I were on stage—chosen by God, or the cosmos, or random chance, to have a child who was so different.
Yet on that day, I felt ready, even eager, to leave our warm, safe home and take my daughter on a walk in the brisk air. I bundled Sarah in a puffy zippered snowsuit and a cap that Sally’s mom had knitted. The stroller was a burgundy canvas hand-me-down from one of Sally’s friends. It was a bulky thing, with gray plastic wheels that wobbled at a certain speed.
In the cold air, Sarah’s cheeks turned pink. The sun was bright, and the bare limbs of oak trees were a stark black against a brilliant sky. A few papery brown leaves still clinging to the branches fluttered and rattled in the breeze. I tucked the blanket around Sarah. We walked past the connected buildings of the hospital, a rambling maze of additions and add-ons, toward the campus of the University of North Carolina. Past the football stadium and the belltower parking lot.
The wheels of the stroller jittered along the brick walkways. I was glad it was early on a Saturday, so I wouldn’t have to thread my way past throngs of undergraduates moving with confidence and purpose. At the heart of the campus, I walked past the Graduate Library: built of gray limestone, it had a domed roof and a wide flight of stairs leading up to fluted columns. Inside was my favorite place to study: wide oak tables, marble columns, oak card catalogues with long skinny drawers and small brass knobs.
I was glad the quad was empty, and there were no students throwing footballs or Frisbees. I had never mastered the casual snap of the wrist that would launch such a smooth and weightless glide, or the loose-limbed wait for the arrival. I was always too self-conscious to learn to play that way.
Sarah and I walked past the building where I’d taken physics, and past the art department. We cut down an alley to Franklin Street. I peeked in on Sarah. She was sleeping. We crossed Franklin, walked to Rosemary, turned left, and walked a few more blocks.
I had always liked Breadmen’s Restaurant: plywood booths, sunflower-seed bread, and breakfast all day long. The waitresses wore jeans and T-shirts. I shrugged off my jacket and slid into a booth. Paige, our server, had long auburn hair pulled back into a clasp. A wisp of hair had escaped, and curled down the side of her neck. She poured coffee, took my order, and bent over to peek into the stroller. “What’s her name?” Her voice was a whisper.
“Sarah,” I whispered back. “We’re letting her mother sleep in.”
“Good man.” She gave me a thumbs-up, and looked back into the stroller. She opened her eyes wider. “Are we awake?”
I leaned over and looked into the buggy. Sarah gazed up at me, and then at Paige.
“Such beautiful eyes.” Paige’s voice was soft. Sincere. She lingered a moment to look at Sarah, and then straightened back up and poured another dollop of coffee into my mug. “Food’ll be out in a minute,” she said.
Sarah and I stared at each other. I wondered if Paige had a sister or brother with Down syndrome. Or maybe she just thought that Sarah’s eyes were pretty. Sarah stared at her fingers and then put them in her mouth.
I went to the rack at the front of the restaurant and got a paper. Back in the booth, I opened it to the editorial page, enjoying the smell of the newsprint and ink, the chilly surface of the newspaper. Other people came in, and through the open door brought a shiver of cold air with them, making the humid warmth of the restaurant feel even more delicious. I looked at Sarah and wondered if she was too warm. I zipped open her jacket. She watched me.
I ate, read the paper, and sipped my coffee. Sarah dozed again. I left a big tip for Paige, bundled Sarah again, and pushed the stroller outside. Such beautiful eyes. A stranger had seen beauty in my daughter’s face. I felt a swelling in my chest, as if something was expanding there.
I sat on a bus stop bench and took slow, deep breaths.
Sarah’s eyes were closed. Open or closed, they always slanted. Always looked like Down syndrome. Mentally retarded.*
I didn’t know how to feel the loss of something that had never happened. I never got to meet the normal infant we’d been waiting for. Neither did Sally. It was as if we were standing on an empty railway platform watching a train rumble away, and it was taking our baby with it. A different child had been left behind for us to take care of.
* The word “retarded” has become a derogatory term and is rejected by people in the intellectual disability community. When Sarah was born, the term was still used as a medical term. The use of this word, and the word “normal,” will be addressed later in the book.