The Shape of the Eye

 


Introduction


     We were waiting for our family doctor. I felt—not serene, but expectant. Uncertain. Theresa lifted Laura from her car seat and set her, still sleeping, on the clean white paper of the exam table. I got out colored pencils and a notebook for Ellie. We were paging through magazines when Dr. E. came in, knocking softly. He closed the door, crossed the room, and turned towards us.

     "We got the lab tests back," he said. "Nancy called and had them faxed down here." He paused.

     "Laura does have Down syndrome," he said.

     Ellie was coloring quietly. From where I was standing, I could see the first tears forming in Theresa's eyes.

     "I believe," he said, "that these children come to the families most able to take care of them."

        No one said anything. Ellie kept drawing her rainbow, keeping the colored lines parallel. There was a bump in the first line she'd drawn, and she copied it through all the succeeding lines, the blip softening into a gentle swell. Ellie, meticulous, precise, absorbed. She didn't seem to register the news. Theresa stared up at the doctor, her eyes wet. I felt nothing, only the grip of fact, so I began asking questions, setting them out like planks heaved across quicksand. What do we do. Whom do we contact. What do we need to know.

        I thought a lot about that moment in the weeks following. The way Dr. E. turned towards us, the door easing towards an institutional click. His face, pinker than usual, the hush in his voice, his gentleness. All said that the news was coming. Laura did have Down syndrome. The question attending her birth had been answered, but that answer only seemed another question. Or it was, like the chromosome itself, the beginning of a thousand questions. Clearly an answer was called for.


        I began to read. I wanted to understand what Laura had.

        Down syndrome, as I learned, is a chromosomal disorder. Chromosomes are long strings of DNA, the molecule that encodes inheritance; taken together, they constitute a genome, a full set of instructions for guiding development from the fertilized egg. Most people have forty-six chromosomes: twenty-three from Mom, twenty-three from Dad, a perfectly matched set. People with the main form of Down syndrome have an extra copy of the twenty-first chromosome, the smallest. Because that extra copy is present at conception, it is preserved faithfully through each successive cell division, and ten trillion cells or so later, it is ubiquitous in the body.

        Having an extra chromosome makes for significant changes. People with Down syndrome have a distinctive look, almost always with almond-shaped eyes; they have some degree of intellectual disability, usually in the mild to moderate range; and they're at increased risk for a number of medical problems, including heart defects, intestinal malformations, and leukemia, though an individual child may have none of these. There are also features you wouldn't notice if you weren’t looking for them, like a single line across the palm.

        Writing this description, I know it is necessary and misleading, accurate and deeply false. A syndrome means, at root, a “running together.” When you have a child, it all runs together: the heart defect, the eyes, the way her voice sounds, the name of the speech therapist, the worries over the future, the joys of discovery, the sliding sense—slow, quiet, enormous, an avalanche in the skull—that different is not as different as you thought. The genes produce the child, who lives a story, whose story is bound up with yours. So reducing a child to a heap of medical fragments is, for a parent, a complicated and dissonant act. It is a necessary fiction, a story one tells only in order to move on.


        Nobody, so far as I know, finds out that a newborn child has Down syndrome, shrugs, and returns to decorating the nursery. We were undone by the news for a long time. If Down syndrome were ordinary in the world, if a common-sense view of dignity and personhood and capability prevailed, then perhaps our early days would have been easier. But Down syndrome is not ordinary in the world.

        I kept looking things up. Against whispers in my own brain, against shocked silence, against the raw unfamiliarity of our newest family member, I turned to fact. I felt not just ignorant, but culpably ignorant. And yet in my reading, I only found my own confusion writ large.

        I felt that Laura's life was valuable, that she was a child, a sister and daughter and granddaughter above all, that she might learn and thrive. I also felt that our lives were over, that her birth was a tragedy, and that we were condemned to a a half-life of hospitals, acronyms, therapists, and forms. In my unhinged research, I discovered that everything was true. She was "a child first"—but of course, she could have this problem, and this one, and this one, and this one. Or the big list came first, typically framed as they: they have heart defects, intestinal atresias, low IQs, joint problems, and on and on. Oh, but they are happy little tykes! None of it made sense. I did not see how a child could be happy if she had so many problems; I did not see how, with so many problems, she could be "a child first." I had sought refuge in fact, like someone who ducks into a cathedral for quiet, and instead finds an echo chamber for every footfall. Or I was the echo chamber, thronged with a dense collision of numbers and hope and resignation.

        There were, it seemed, two kinds of stories told about my daughter. In one, she seemed to be a developing child. In the other, she seemed not even human. She was a defect, a tragedy, an abnormality. I did not see how she could be both. It was as if Theresa had given birth to a blur.



Arrival


        Laura was born at 7:02 on a late February morning, after a labor Theresa described as "blessedly brief." I woke up around three, hearing Theresa say, "George. I think my water just broke." "O.K.," I said, "O.K. O.K. O.K." I began stuffing underwear and socks into an overnight bag. We called Kai, who came over to stay with Ellie. We woke up Ellie and told her we were going to the hospital. She mumbled something and went back to sleep. The first and second contractions were eleven minutes apart. Theresa wanted to strip the bed. She wanted to red up a little, the Pittsburgh slang for tidying. The second and third contractions were four minutes apart. I objected to the redding up. We hurried out to the Subaru. Four hours later, Laura was born, without anesthesia or complications, in a half-empty maternity ward. She weighed seven pounds, three and a half ounces.

        We were allowed a few hours of ignorance. Our nameless daughter was whisked off for the obligatory bath, eyedrops, and heel stick. She was gone for a long time, but I didn't suspect a thing.

        Later that day, Dr. E. came to see us in the hospital. Ever since we'd moved to Oregon, Kevin Ewanchyna—Dr. E., to most—had helped Ellie through the colds, ear infections, and vaccinations of an ordinary childhood. Sandy-haired and neat, circumspect, a trace of Canada in his vowels, he'd arrived in Corvallis at about the same time we did, and we'd lucked into his practice. He congratulated us, greeted Ellie warmly, and began to examine Baby Girl Estreich. As he moved the stethoscope's disk lightly across her chest, he seemed more intent than usual. When he mentioned Down syndrome, a silence sharpened in the room, but the moment passed.

        It was the first hint of what was already true, and you would think Dr. E.'s words would be seared in memory. And yet, even though I have memorized many of my friends' license plates and can recite the supporting actors for movies I have not even seen, I cannot recall exactly how Dr. E. broke the news. Perhaps the possibility was too out of place to process, like a living image in an animated world. Perhaps it seemed too unlikely to dwell on, or too dire. As Dr. E. hastened to point out, many typical features were absent. There was no heart murmur. The palate was not cleft; it was not even highly arched, though the arch was somewhat pronounced. The "simian crease," a single line across the palm, was absent. And though most babies with Down syndrome are hypotonic—"floppy"—our daughter's muscle tone seemed good. What defied explanation were her eyes. They were vaguely Asian, almond-shaped, the same striking appearance that had led to the condition's original name: Mongolian idiocy. Fortunately, I had the answer for that one. My mother is Japanese.

        We consented to the test for Down syndrome. Somewhere in Portland, a pathologist would isolate a nucleus from one of Laura's cells. Then he would stain the chromosomes, count them under a microscope, and disclose the range of possible futures. It was, as Dr. E. said, "for peace of mind." He left the room. A little later, a nurse came in, drew blood, and said we would know in a week.

        Balloons arrived, flowers, baskets of jellybeans. There were phone calls, e-mails. Through it all, Down syndrome was there and not there, a tremor, a disturbance, a mirage. It was the universe a half-step to the left, one we might enter, might not enter, had already entered. It was there in a phrase like simian crease—I thought, isn't that kind of, well, offensive? It was in the long pause as another doctor cradled our daughter's head in beefy hands, intent, compassionate, saying, "I notice the eyes are slightly almond-shaped"; and it was in my quick, already-automatic response, saying, "My mother is Japanese." I held up one generation against another. I held up what I was, against what she might be.


        Ellie waited patiently for us to quit talking. She was seething with happy uncertainty. She wanted nothing other than the chance to hold her sister, and to stay within six inches of Theresa at all times. The three of them snuggled in the bed. We asked her what she thought about her little sister. "Good," she said, with emphasis, drawing out the vowel, as she only did for the best things: sleepovers, cotton candy, new sibling. We asked her about names. "What about Esmerelda?" said Theresa. "Mom," said Ellie. I said, "What about Sillyhead?" "Dad," she said, "stop it." I said, "What if we call her Ellie Is a Sillyhead? That way we could say Ellie is a Sillyhead every time we wanted to talk to her." "Dad," she said, reproving. Clearly the situation's gravity had escaped me.

        It was the end of February in a dry winter. Normally, in western Oregon, the rain begins in October, and doesn't really end until July. But it had been sunny, and all winter we walked around guiltily enjoying the good weather, which we knew we'd pay for, down the road, in wildfires and reduced salmon runs. We didn't care. It was nice out and we weren't suffering from SAD. It felt like that in the hospital, a temporary stay, a grace period, the sunlight shedding calm possibility through plate glass. The next morning, as Theresa and our second daughter slept upstairs, I sat in the hospital cafeteria with Ellie, eating dry scrambled eggs and French toast. I glanced idly at the new wing under construction next door, its broad webwork of shadows falling across the completed building, the bundled rebar and coils of wire piled in future rooms. Back upstairs, men in hardhats were asking directions through the pleasant beiges and stenciled decorations of the maternity ward.

        Baby Girl Estreich was Laura now. The day before, I'd driven home to get the paperback full of names. In the room, I'd thumbed through the pages, a tiny telephone book of future lives, and read out possibilities. Nothing seemed right until I said Laura. The name fit, in the way Eleanor had, for Ellie. Theresa wanted Laura's middle name to be Regina, after her father Regis; there was a symmetry, both grandfathers, both passed on, represented in a name. Laura Regina Estreich. We liked it, though we hadn't planned it. We'd been thinking of the short list left over from Eleanor, but it seemed better, somehow, to start over.

        Named, plugged into the system, Laura was free to go. We signed the discharge papers. I slipped our copies into the plastic bag, next to the sheet inked with Laura's footprints. I slung the duffle over my shoulder, and the nurse checked our ID bracelets against Laura's, before wheeling us out. Strangers beamed at us in the elevator. The nurse inspected our infant car seat. She shooed the smokers away from the hospital entrance. We told her about the lab tests we were waiting on, and she said, "Yes, some of us were wondering about that."

        By the time we returned for our two-week checkup, we had discounted the possibility of Down syndrome. Laura was nursing, if not with the avid concentration her older sister had shown, then well enough. She could track a set of jingled keys. I'd been thinking about the possibility, though, so I'd called Dr. E.'s office after a week had passed. Nancy, Dr. E.'s nurse, said they were still waiting on the lab, but sometimes these things took a little longer.


        We could not go back. We could not undo the crucial moment, the precise and unrecorded time of day when the initial error in cell division occurred, adding an extra chromosome to the beginning of what Laura would be. Now the infant before us bore that chromosome in every cell. It was in the shape of her eyes, the texture of her hair, in her brain and joints and heart.

        I wanted to rewind the tape to the day before, to a refrigerator filled with casseroles baked by neighbors and friends, phone calls from family back east, and Ellie eager to hold Laura: she sat crosslegged on the carpet, her arms stiffly ready. We lowered Laura towards her, saying, careful, support her head, remembering how fragile Ellie had seemed, five and a half years ago. A weak afternoon sunlight splayed its rhombus across them. Laura blinked. Her hands opened and closed slowly, with no force, and I dandled my index finger against the translucent fingertips, marveling at the improbable size of newborn children: they seem scaled to another world. I remembered feeling the same way with Ellie, and felt the pleasure of layered time, the easy spiral of repetition and variation, intricate as a Bach invention. I looked at Laura's eyes, thought of my mother, and was reassured. We smiled down at our infant.

        For a long time, I remembered this ignorance with intense nostalgia. We were under a spell: we had wished for normalcy and been granted two weeks, a time outside time, when we could hope for anything at all. Since our wish was not denied, denial made it true. When the spell was broken, the child before us assumed her true appearance—or say, instead, that her identity was revealed, that the centrifuge performed its necessary separations, and that her appearance was revealed in turn. She was unchanged and transformed. The palate was definitely arched, though not extremely so. The heart murmur was faint, but there.

        Theresa said she felt as if our baby had been stolen, and replaced with a collection of medical problems. Steadying her voice seemed a pure act of will: the sobs that racked her reminded me of the birth. I listened, blank, disoriented. Past and present had been disjoined; pattern, as I knew it, was gone; Laura was not like Ellie; the days after Ellie's birth were not like this. Theresa had wept then, as well, but her predominant mood was joy. A research scientist to the core, she would smile through tears and say, Hormone levels. I remembered the river of time widening, slowing, the current broadening almost to stillness, our vistas a plain of light. We'd had that again for two weeks, a bright sure forward-moving calm, and it had led to the lip of a waterfall.

        We turned to research. What we learned did not console us. There was no ground to fact: the hard bright particular grains added up to quicksand, a dry drowning. Early intervention, one booklet explained, is the key to continued progress. Children with Down syndrome tend to have hypotonia, or low muscle tone. If you did not do the special neck-strengthening exercises their heads would loll. Until they gained head control they would not sit up. Until they could sit up they would not crawl, and so on. And muscles are required for speech, for control of the complex mouth-shapes required for language, shapes made more difficult by deformed palates and thickened tongues. We would need a speech pathologist to assess Laura's abilities and to prescribe exercises, like sucking Jell-O through a straw. These lessons, of course, depended on communication. Language acquisition, early language acquisition, was key to further mental development. Language depended on hearing, another problem area, likely as not. We should test hearing every six months. We might consider learning sign language. Contact your local social services agency, the booklet advised. They can help you get in touch with the specialists your child's development requires.

        Then there were the medical problems. Laura's chances of having a cardiac defect were about one in two; for a serious defect, requiring surgery, the chances were one in four. There are gastrointestinal problems, ranging from constipation to an imperforate anus, the simple absence of a hole. There are immune deficiencies, flat feet, respiratory ailments, nearsightedness. There is an increased risk of leukemia.

        It can be overwhelming, one pamphlet consoled. You will need time to grieve for the child you did not have, and to recover from the shock. It then continued: an echocardiogram should be performed, and a pediatric cardiologist should be consulted as soon as possible.


Two days after the diagnosis, we returned to the hospital for an ultrasound of Laura's heart. In outline, the experience was familiar—the darkened room, the blue smear of gel, the amplified whish whish whish—but it felt wrong, an ultrasound after the birth, and when I looked into the aqueous cone of light on the monitor, I recognized nothing. There was no proto-human shape, no sudden recognition of head and feet. I saw only movement, a soft changing architecture of muscle, the view flexing as the tech angled the sensor, this way and that, against Laura's chest. A flurry of key clicks, and a kind of fire appeared, superimposed on the heart, blue and orange pixels flickering in sync with Laura's pulse, the colors mixing. Then another click, and the fire vanished, then the heart, replaced by the sediment of a ghostly earth: ribbons, folds, broken gaps, the folded rock of geological time. What's that, we asked, and the tech said she would rather defer to the cardiologist.

        Later that day we got the results. The exact diagnosis would be confirmed later by the pediatric cardiologist in Portland, but the preliminary results were clear. Laura had an AV canal defect, a problem found almost exclusively among children with Down syndrome. In essence, the heart had failed to complete its development: the valves were unfinished, the walls between leaked with three separate holes. There was mitral regurgitation, blood backwashing through a leaky valve. This was the murmur the doctor had heard; this was the fire I'd seen. Given the magnitude of the defect, Laura would probably need surgery. In the meantime we should try to keep her from getting upset.


If you had asked me, before my child was born, what I wanted her to be, I would have told you I didn't care: I wanted her to be healthy and happy. If she didn't want to go to college, well, that would be fine, and I would support whatever life choices she made. I was assuming, of course, that a person with forty-six chromosomes would be making these decisions. Now I wondered about everything I had taken for granted with Ellie, the assumptions undisturbed by the microscopic. I wondered if Laura would have friends. I wondered if she would go on dates, if I would need to chaperone. I realized she would not go to college. (Some people with Down syndrome do go to college.) I wondered if she would have to live her whole life with us. (She may.) I wondered how long she would live. The future seemed at once unreal and massively heavy, as if we could feel the atmosphere's weight.

        We had begun, hesitantly, to tell others. And the question, whether spoken or not, was always: Did you test? One mother, when Theresa answered that we had not, asked why not, in disbelief, almost in anger. Her implication was clear: this all could have been avoided. Theresa recounted it later, and both of us were righteous, furious, loyal to the child we did not know. And yet it was hard, sometimes, not to question the decision. Our lives had changed overnight; Laura's heart surgery was immediately ahead; beyond that was the siege war of inclusion. It was never Laura we regretted: she charmed us from the beginning. It was the new life we feared.

        We'd decided against fetal testing. Since Theresa wouldn't have chosen an abortion, there was no reason to test; the triple screen, because of its high false positive rate, could at best indicate the need for amniocentesis, which carried a small but real risk of miscarriage. For my part, I'd said to Theresa, early in the second trimester, that we'd take whoever came out. Our choice—or the choice Theresa made, and I assented to—was applied self-knowledge, a hedge against regret. We knew that given who we were, an abortion would invite a durable grief into our lives.

        Now that Laura was here, we felt something like the grief we had sought to avoid, and because we were grieving a phantom, our feelings betrayed the actual child before us. Each question had an aftertaste of guilt. Had we done the right thing? Should we have tested? Had we been selfish? Had we, wanting Ellie to have a sibling, saddled her with a burden? Had we really considered what it meant to raise a disabled child? Had we conveniently mistaken the unlikely for the impossible? Now, evidently, the possibility was considering us. The hypothetical had hair, hands that clenched and unclenched softly, eyes to look around. People said she looked like me.

        I felt foolish, bemused. Like it or not, I had constructed a future, one nearly as specific and complete as Laura herself; and that future, that nine-month reverie, was completely, provably wrong. Even as the forty-seventh chromosome added itself to each cell and differentiating system, brain, eyes, hair, defect-perforated heart, I, too, had been forming a life. Or, more exactly, a para-life, a hazy projection of new child and altered family. I expected, I suppose, a boy—that seemed balanced, one boy, one girl. He would be the rebellious one. There would be arguments. I reminded myself not to compare the two children, and not to expect too much. I steeled myself for a busier life, for increased stress and reduced writing time. Parents with two kids would say, "The second child changes everything, you have no idea," and I would say, "I know, I know." Everyone agreed there was no way to imagine it until you got there.




A Child First


We met in 1983, near the end of our first year at the University of Virginia, in the Pleistocene era of what was not even a relationship but is now a marriage, when my hair was long and I still drank herbal tea. We were eighteen years old. We sat on the floor of Theresa's dorm room, talking, then silent. I didn't mind the silences. They felt fine. Besides, I was nursing a low-grade depression that I hoped was mysteriously attractive. Theresa furrowed her brow, pinwheeled a pencil through her fingers, looked unsure of what to say. I liked her right away—liked her liked her—but with one thing and another, other entanglements, the usual fears, the poet unable to communicate his feelings, we were just friends for a long time.

        It's safe to say that neither of us was thinking about Down syndrome then. But it may be that Laura's story had already begun: that the nondisjunction had already occurred, and the extra twenty-first chromosome was already present, ready to shape a face, a heart, a child trailed by murmurs. If our lives were a tragedy we would call this fate, the thread of inheritance spun out of the dark of family, the ancient fault surfacing in a new ruin. But our lives are not tragic, only puzzling, most of the time.

        It's all dead-end metaphysics anyway, irrelevant to daily life. Whether the extra chromosome was waiting for years to shape our lives, or whether it arrived later, like a mysterious guest stepping off a train, is simply unknowable; and if we could know it, that certainty would not console. All of our chromosomes reach backwards into the past, into a darkness we cannot see, so to tell a story about family and chromosomes is to choose a beginning for a story that has no beginning, and an end where there is no end.


Theresa had grown up the oldest of five, in a Catholic family—first in Irwin, a small town outside Pittsburgh, and then, as her father ascended the ranks of the phone company, in the suburbs of Philadelphia. I had grown up outside New York. My father was deeply Jewish, and deeply nonobservant; my mother was technically Jewish, a wedding convert, but had grown up in Japan, arriving in America at the age of thirty.

        Raised in the cradle of devotion, Theresa had become a chemistry major. She already had the best qualities of the scientist she would become: pragmatic, thoughtful, observant, in the secular sense. She liked organic chemistry. She was interested, she said, in the fact that tiny quantities of neurotransmitters made it possible for you to remember your name, or what happened yesterday. Over twenty years ago, and who knows what I said in response? Probably I sipped my tea, nodded vigorously, and did my best to continue appearing sensitive, since that was clearly working.

        Having been brought up, myself, by pragmatic relativists—wanderers, loners, skeptics—I was trying to write poetry, the religion of the irreligious, and had developed an enthusiastic taste for absolutes. But every difference between us was part of a continental attraction. In late-night conversations interrupted by alcoholic braying from the dorm balcony, I made sweeping statements on topics I knew nothing about, after which Theresa would calmly ask a question I had not thought of or point out a fact I had not known. I kept talking, to keep her from going away. I had found someone I should not let go of. This perception has endured, beneath my boring turmoil.

         We dated through college. In graduate school, in the days before cell phones and e-mail, we racked up three years of eighty-dollar phone bills, saw each other on alternate weekends, memorized the highways between Ithaca and Philadelphia. I finished my master's in poetry writing, taught English for another year, then moved to Philadelphia. A year later, in 1990, we were married in her parents' suburban church, with over two hundred guests, most of them from Theresa's side. We had added, to the standard vows, a promise "to honor each other's spiritual growth." The words were vague enough to be permitted, but different enough to startle the parish priest, who had been drowsing in a chair on the dais. The reception was a spectacular success, although the caterer had a panic attack and locked herself behind her office door. I played guitar, badly, with the band. Theresa threw the bouquet and garter, and children fought over them. By then my mother and father, who had looked uneasy and outnumbered on the hard pews, had begun to enjoy themselves. The next day, in a synagogue I had visited only once, we were blessed by a rabbi before a sparse assembly of immediate family.

        We rented an apartment in Philadelphia, so Theresa could finish her degree; I taught freshman composition at three different colleges. Two years later, after months of fading hope, Theresa's father died of non-Hodgkins lymphoma. A year later, Theresa finished her degree, and we moved to North Carolina. Theresa had a postdoctoral fellowship at UNC-Chapel Hill, and I got a job teaching composition at Duke. It was 1993. We bought our first house, a foursquare on two acres with a failing well. We got Penny, an eccentric and submissive cinnamon-colored mutt, and began to think about having a child.

        A year and a half later, Theresa discovered, on her first trip to the fertility clinic, that she was already pregnant. "We do good work here," said the nurse, smiling. Two weeks later, my father called to say he had a spot on his lung. I immediately began renovating the house. Ellie, our first daughter, was born that October, a pure happiness ringed by sawdust, end-stage cancer, and ungraded papers. My father died four months later. Soon afterward, I quit teaching to raise Ellie full time at home and write poetry when I could.

        In 1998, when Ellie was two and a half, Theresa was offered a tenure-track job in Oregon. After our years living on the margins of academia—mobile, rootless, hypereducated, and underpaid—we might, at last, settle down. Another dream of permanence, beginning with another departure. We visited in February, and as Theresa negotiated the equipment budget in her startup package, I took Ellie to an elementary school playground. Twilight, cool out but not cold, everything wet, a sliver of sunlight weighed down by clouds. I wiped off the dripping slide with my jacket. The trees, across the playground, were shrouded in pale green. That evening I asked one of Theresa's future colleagues: wasn't it early for spring leaves? No, I was told, that was moss. From all the rain.


So we bought a house in Corvallis, Oregon, where the ocean was on the left, the jays looked wrong, and it hardly ever snowed. We arrived in September and began settling in. We went to the Farmers' Market. We found the bagel place, the coffee place. In the evenings we went to Chip Ross Park, where you could climb a small rise and look south down the valley, a flat swath of grass and interstate. You could see glints of the Willamette River, in its wide meander north towards the Columbia. To the east were new mountains, abraded cones edging snowy tops above green foothills; beyond them were all the rivers I wanted to learn. To the west were the older hills of the Coast Range, rounded and blurred together like the waves of the Pacific beyond.

        We liked the town, it seemed tidy without being sterile, free of the Southern social codes that had puzzled us in North Carolina. In Oregon, everyone seemed to be from somewhere else too, so we fit right in. We made friends easily. Theresa began teaching, setting up her lab, writing grants; tenure was not a given, but her chances, given reasonable progress, seemed good. We enrolled Ellie, then three, in a preschool. While she was there, I wrote and worked on the house. It was not long before we began, cautiously, to think of a second child. Ellie had been so wonderful, such a gift beyond imagining, that it seemed unfair to deny her a sibling.

        Until Laura was born—or, more precisely, until her diagnosis—we could still understand ourselves as having a typical American story. We had grown up in the suburbs and gone to college. We had graduate theses bound in black, stamped in gold, and printed on archival paper, to endure for nonexistent readers. We had experienced the death of parents, the birth of a child. We did not attend church, or synagogue. We leaned to the left, politically, but beyond voting did little. Now that story seemed over, and we seemed part of another one, where you spent your life in hospitals, you had to sue your local township so your kid could play soccer, and you got airlifted in the Lifeflight helicopter, once in a while, to a major medical center. We did not feel ready. We had, as one friend e-mailed us, taken an exit ramp to another planet.

        We had not only lost our own story, but the possibility of any story. A story, in its very structure, offers comfort. Even the bleakest story has a curve of action, a beginning, middle, and end, and so it offers the possibility that experience can have an intelligible shape. But having a child with Down syndrome did not map onto a rising or falling curve of action; the event derided every curve. It spoke of chance, not continuity—in the original meiotic error, by which the extra chromosome came to occupy an egg or sperm, and now, in the array of dire probabilities the pamphlets disclosed. So we felt clueless, benighted, deceived. For months it had been true. We had not even known what our story was.


We sent away for books: Medical and Surgical Care for Children with Down Syndrome, Babies with Down Syndrome (in The Special Needs Collection), Differences in Common. I lifted them like prophecies from the styrofoam peanuts. At night, long after Ellie and Laura had fallen asleep, Theresa and I lay side by side, the space on the quilt between us scattered with papers, reading. I had the new-parent guides and pamphlets, Theresa had full-text article printouts from her Medline searches: Down syndrome AND heart surgery, Down syndrome AND anesthesia. She read quietly, intently. I interrupted her, every five minutes or so, with a statistic, an anecdote, a random thought.

        Starved for knowledge, I gorged on information. I read about dental hygiene, leukemia, mitral valve regurgitation, special needs trusts, mainstreaming and inclusion, physical therapy, communication skills, atlantoaxial instability. I felt like the students I'd taught years before. A term paper was due, and I had just discovered how much there was to look up.

Laura slept quietly in the Porta-Crib beside our bed. We draped the pink horsey blanket over the crib, to keep the reading light out of her eyes.

        My desperate cramming had its roots in a simple fact: I had no way to think about Down syndrome. I did not have a thesis, concerning Laura. Every approach seemed threadbare. I had been wondering, in my vague, science-ignorant way, about Nature Versus Nurture. But Nature/Nurture seemed not a choice, but an opposition strained to the breaking point. On the one hand, the effects of Nature were obvious: the chromosome, the heart defect, delayed development. And yet Nurture would make the difference, according to what we were reading, between a child who might graduate high school, and a child who could not tie her shoelaces.

        There is little I would change about the books I was reading. They were reasonable, occasionally wise. And reading them, I became fluent in a wisdom I did not possess. I had read, for example, that Laura was "a child first." I repeated it to Theresa. I tried it out. It sounded wrong when I said it—though, more exactly, it sounded wrong and right at once, not quite accurate but also deeply true. What did that mean, a child first? If she was a child first, then what was she second? The idea seemed not to go far enough. I didn't want a child first. I wanted a child. I wanted some sliver of Laura's life left pure, not claimed by medicine and experts. I wanted an unencumbered happiness. Not happiness with footnotes, caveats, and codicils, not the attenuated, saccharine, me-too version of the real thing, but the thing itself. We had experienced it with Ellie, instinctively, easily; with Laura, we would have to learn it. Or she would have to teach us.

        I gnawed at consolation. In a parable of acceptance known universally among parents of children with Down syndrome, Emily Perl Kingsley writes that having a child with Down syndrome is like booking a trip to Italy and landing in Holland instead. "It's just a different place," she writes. "It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around . . . And you begin to notice that Holland has windmills . . . and Holland has tulips. Holland even has Rembrandts."

        But it is not like arriving in Holland, at all. It is like waking up to the same world you went to sleep in, except that overnight a team of industrious demons has jigsawed your picture of the world into a ten thousand piece puzzle. You know that you will be piecing things together for a long time, and that when you are done the seams will be evident everywhere.

        I read "Welcome to Holland" to Theresa.

        "Welcome to Holland," she said acidly. "More like welcome to Croatia."


Every piece of advice, no matter how reasonable or well-intended, seemed remote, like distant shouting. I ticked off every noun in every sympathetic pamphlet: anger, yes, grief, yes, disappointment, yes, check, check. Yet the feelings seemed attenuated, distant, not mine. This too was a part of the script: shock, numbness. Check. It was vaguely disappointing. My feelings weren't original, only diluted. As for the future, I assumed I would also feel grateful, loving, and well-adjusted, eighteen years down the line—a naturalized citizen of Holland—but in the meantime, Theresa was red-eyed, my stoicism was fraying like a rope bridge, Ellie was desperate to help and desperate to please, and Laura's heart, according to the ultrasound, was basically a Swiss cheese of holes and malformed valves. But we coped. We tried not to let Laura get too upset. We tried to pay more attention to Ellie. We e-mailed updates to friends and family. We kept reading.

        What I found myself turning to were the brief, anonymous accounts transcribed from parent interviews and reprinted in Babies with Down Syndrome. The transcripts had not, like "Welcome to Holland," been polished into wisdom; they seemed questions, not answers. They did not package experience into parables or lessons. They did not presume to say what I was feeling, or what I would feel, later on. They did not reassure. And I found they made me feel better. They were often stark: "I wanted people to say congratulations, and they didn't. It was like my baby had died." "When the doctors told us at the hospital that our son had Down syndrome, we both just thought the world opened up and swallowed us right then." And while they offered hope, they were also honest about the limits of transformation: "My daughter is going on two, and I still think about the fact that she has Down syndrome every day. I'll think, 'Oh, she really looks (or doesn't look) like she has Down syndrome right now.' Or, 'I wonder if she's doing that because she has Down syndrome?' Or, 'Wow—she seems so smart and inquisitive; how could she have Down syndrome?' I don't feel especially sad when I think these things, but I guess I haven't really accepted her Down syndrome either."


There is a thread of sentiment in many of the writings about Down syndrome, an indigestible, treacly sweetness—Marilyn Trainer is a no-nonsense, welcome exception—and in the beginning, in particular, I could not abide it. I still shy away from the roses, the angels, from the rhetoric of Holland.

        But beneath that sentiment, often enough, is a toughness earned from years of facing down a skeptical or outright hostile public. Emily Perl Kingsley, and others in her generation, and the generation before her, were the pioneers; if we have an equilibrium now, if we have come to accept our children in a matter of weeks rather than years, or at all, it is because of them, both for their political efforts in changing the landscape of disability, and for their personal efforts, their witness to the raising of their own children.

        It is a remarkable experience to read memoirs from the mid-twentieth century. Remarkable, first, because of how little has changed. In Lucille Stout's I Reclaimed My Child, for example, the chapter titles—with the exception of the first—could be stations of my own journey:


1. My Child Is Sent to An Institution

2. I Have an Opportunity to Learn About Mongolism

3. I Reconcile My Knowledge About Mongolism with My Feelings About Having a Mongoloid Child of My Own

4. The Mongoloid Child Can Fit Into the Family Picture


What is different, though, is that the journey takes years, and that the child—institutionalized in early childhood, a secret that warps the family—never comes home. She lives at the institution; the happy ending is that she comes to meet her parents, to know them, and to visit them on holidays.

        Stout's memoir is about finding words in a vacuum. It takes years to even find someone who knows something about "mongolism," to work up the courage to speak with him; it takes even longer to begin to articulate what she has been feeling, to share her feelings with her husband, and to lurch towards an acknowledgement of her child. The loneliness of the experience is unimaginable. There are hardly any words to find, no memoirs, no Internet, nothing, and so the journey is larval and slow. She describes the enormous difficulty of acknowledging her institutionalized child. Of training herself to say that she has three children, and not two.

        Parents like Stout are the discoverers of Holland. We have a different difficulty: we arrive in a country where everything is already built, where there is little left to discover, and where preprinted slogans are ready to recite. A child first. We struggle to find words against a muffling acceptance. Because the right words already exist for us, our spoken messages, in the beginning, tend to outstrip the unspoken. We arrive before we arrive.

        No matter how sane, accurate, and up-to-date my sources were, there was one way in which research was basically futile. The knowledge I needed was rooted in experience, not literature. One reason it was so frustrating to read Emily Perl Kingsley was that she was writing from the other side of acceptance. I was just not there yet, and no story or statistic could get me there.

        You can no more know what Down syndrome is like from research than you can call yourself a sailor after looking at a depth chart. To see a neatly inked 47 is very different from being at sea.


We had found out, from a blood test, that Laura did not have leukemia—chances were one in a hundred, which seemed, after the improbable fact of Laura herself, almost likely—and the heart, I was warily confident, would be fixed. But late one night, I read that the life expectancy, for a child with Down syndrome, was about thirty-five.

        I set the book down and looked around the room. Thirty-five, that'd make me seventy when she died.

        "You can't go by those numbers," said Theresa. "That probably includes infants who died early."

        I nodded, but said nothing, slackening inside, resigned. Endless work, just to get her to functional adulthood. Then early Alzheimer's would set in, and then we would mourn her.

        I was thinking a lot about the late stages of Theresa's first pregnancy, and the early days after Ellie was born, when my father was dying of lung cancer. He'd been pronounced terminal when Theresa was two months pregnant. As Theresa swelled towards her third trimester, my father, with each monthly visit north to New Jersey, diminished, his thin frame approaching the skeletal. Every feeling seemed fused with an inexorable mitosis, the sure duplications fueling both happiness and grief; the tumor seemed a parody of my growing and unborn child. Now, five years later, we had another beginning haloed by trouble.

        It was wrong, I knew, but I could not shake the feeling of familiarity. Just as I had after my father's diagnosis, I was spending time on the Web, scything through prayers and digital roses, clicking and scrolling towards an inedible harvest of terms. Whether with Down syndrome or cancer, I saw that at the core of the medical condition was a negotiated, endlessly interpreted, but finally unchangeable fact: a metastatic cancer, an extra chromosome.

        I talked my way through it, as I always do. Theresa listened, as she always does. But when I began saying how similar things were, this time around, what with the new baby, the medical, the microscopic, the uncertain future, Theresa interrupted to say that things were different now. "Cancer was bad news," she said. "Down syndrome is only hard."


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