Loving a Child With Down Syndrome: Far From the Tree Doesn’t Do It Justice

What women really think about news, politics, and culture.
Nov. 28 2012 5:40 AM

Loving a Child on the Fringe

There is an element of cowardice in Andrew Solomon’s Far From the Tree: Parents, Children, and the Search for Identity.

Leukemia diagnosed, begin of blood transfusions. Moment in the park.
Cristina Nehring and her daughter, Eurydice

Courtesy Cristina Nehring.

If you’d told me five years ago that I was soon to bear a disabled child with blood cancer—for whom I’d have to surrender, possibly forever, career and love life—I’d have contemplated suicide. Moreover, I would have thought this a level-headed response: not an act of despair but a lucid sort of Swiss-style euthanasia.

I was a driven freelance writer and a headlong romantic with no interest in children. I had always assumed I’d have a husband (or perhaps three) and no kid. It had never occurred to me I might have a kid and no husband. Not me, the expectant mother with the nursery decorated in 12 colors four months ahead of due date. I didn’t have a nursery. I didn’t even have a separate room in the bohemian studio I inhabited in Paris, where I eked out an income scribbling for America’s embattled book reviews.

The fact that I continued my pregnancy was a reckless romantic gesture: It was my Greek partner, not I, who wanted a child and who had implored me to keep this one in spite of our tempestuous relationship and slender means. Almost everybody else sounded the red alert: “You can’t have a kid in such unstable circumstances!” they said—which only hardened our determination. I’ll take responsibility for child care! I’ll give the child whatever she needs, vowed the father: “And when all the naysayers see that healthy little blond child running over the cobblestone, they’ll eat their words.”

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Our child, as it turned out, was not blond; she was not healthy, and the only person running was her dad. He headed for the hills of Crete when his daughter was 16 days old, changed his phone number, eliminated his email account, and instructed his family members to have no more communication with me. From that day on, it was the two of us girls in Paris: the mentally challenged infant and the know-nothing mother. A match made in hell. Or was it?

“Parenthood abruptly catapults us into a permanent relationship with a stranger,” writes Andrew Solomon in his often incisive and occasionally exasperating new book, Far From the Tree: Parents, Children, and the Search for Identity. The arty gay son of pharmaceutical millionaires, Solomon is intrigued by the difference at the heart of parent-child relationships. Why, he asks, in several hundred interviews with exceptional families, “do parents devote themselves to raising children who are nothing at all like the ones they thought they could love?” Why do they commit their lives to kids with Down syndrome, dwarfism, deafness, autism, multiple disability syndrome, cerebral palsy, and other “alien” features? And why, most puzzlingly, do they sometimes “end up grateful for experiences they would [once] have done anything to avoid?”

Not that many don’t contrive to avoid these experiences: In his chapter on Down syndrome, Solomon reminds us that at least 70 percent of Americans with prenatal diagnoses of Down syndrome opt for abortion. (That number would, I admit, have included me if I’d had the diagnosis.) Another group—probably larger than anyone thinks—gives their newborns up to institutions. “I wish I could show you a list of the people who have given up their babies to me,” Solomon is told by the head of an adoption agency for children with Down syndrome: “It would read like Who’s Who in America.

And then there is the exit strategy still defended, rather improbably, by a couple of modern ethicists who, in the tall tradition of Adolf Hitler, continue to support the murder of live handicapped children. Parents who do not want their kids with a disability, argues Princeton scholar Peter Singer, should be allowed to kill them until around age 1. (You sense he could be talked into extending this grace period.) The logic behind this argument is as puerile as it is sinister: “Most women who eliminate an unwanted child will produce a wanted one,” Singer claims, “and the loss of happiness of the one who is killed (whose life would have been unsatisfactory) is outweighed by the happiness of the healthy child who follows.”

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Eurydice

Courtesy Cristina Nehring.

Leaving aside the question of whether one can measure happiness in coffee spoons and, more troublingly, compare the real happiness of an existing child to the potential happiness of a nonexisting child, it is a cliché of developmental psychology that kids with disabilities like Down syndrome often outstrip their peers in joie de vivre. Something about their trust, tenacity, and tenderness—as well as their often uninhibited engagement with other people—seems to equip them for lives that are not darker than the lives of sensitive intellectuals but brighter.

Cut to: Paris, fall 2012. I am sitting next to my cherry-lipped, porcelain-skinned daughter, now 4 years old. I step out of the medical transport van that has ferried us home from her preschool and heave her onto the sidewalk. She giggles and extends two fingers to stroke my cheek. Before the driver can pull away from the curb, I gather her against my heart, draw back a few inches, smile in wonder into her radiant smile, and kiss her face and hair and temples as holiday shoppers stop and stare.

Eurydice’s and my walks through town are punctuated by spontaneous remakes of Doisneau’s “The Kiss”—except with toddler and mother switched in for boy and girl. Not that things are easy: Before we’ve covered the 250 yards between the door of the medical van and our apartment building, Eurydice will have darted into traffic three times. Like a few other kids with Down syndrome, she is inhabited by an irrepressible compulsion to break out and explore, which combined with her perfect fearlessness causes me a great deal more stress than many of the better-known problems of Down syndrome. Walking with my child is like trying to corral a kitten. You hold her by the scruff of the neck, or you lose her. Once the French fire brigade returned her when she made off from a playground—I had turned my head for an instant; she’d gone six blocks in two minutes.

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Eurydice

Courtesy Cristina Nehring.

This scruff-holding is more than physical; it is medical and mental. After spending her first year of life with serial lung infections, Eurydice evolved a frequently fatal leukemia—another risk factor of Down syndrome, albeit a rare one.

Six months of outpatient blood transfusions gave way to seven months of inpatient chemotherapy. During this period there was no exit from the hospital isolation room for either of us. Several times Eurydice hovered on the edge of death. She lost her long chestnut-colored locks and saw her satin baby chest carved up to make room for three consecutive catheters. Still today, there is a garish scar over her heart across which—either in obedience to a subconscious sense of theater or in memory of the nurses who applied disinfectant to her wound—Eurydice likes to smear blood-red lipstick.

It is sometimes said—and Solomon’s book often echoes this bias—that autism is mysterious, Down syndrome is not. Autists are prodigies, introverts, misunderstood; people with Down syndrome are just dumb and dull. And yet, Eurydice has always been mysterious to me. To this day she does not speak—or, rather, she does not speak any publicly recognized language. But she has an enormous amount to say, uncanny capacities for observation, and startling social intelligence. In the French-English-German universe she inhabits, she has invented a vernacular all her own in which she makes orations so self-assured, well-inflected, and precisely punctuated by rhetorical gesticulation that strangers often inquire which language it is she’s speaking.

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