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.

(Continued from Page 1)

Wherever she goes, she brings people together—imperiously gesturing to cantankerous couples to sit down together and lifting their palms onto each others’ thighs, reconciling warring classmates by joining their hands, and charming child-leery adults with flirty smiles and studious imitations of their idiosyncrasies. Her gifts are the opposite of my own: Where I am shy, she is bold; where I am good with (known) words, she is good with drama, dance, and music; where I am frightened of groups, she loves them, and the children in her preschool compete hard to sit by her side at lunchtime as the nurses in her hospital petitioned to be assigned to her room.

121127_DX_eurydice_14
Cristina Nehring and her daughter, Eurydice

Courtesy Cristina Nehring.

Am I “cheerily generalizing” as Solomon says of other Down syndrome parents, “from a few accomplishments” of my child? Perhaps I am. But one thing I’ve learned these last four years that possibly Solomon has not: All of our accomplishments are few. All of our accomplishments are minor: my scribblings, his book, the best lines of the best living poets. We embroider away at our tiny tatters of insight as though the world hung on them, when it is chiefly we ourselves who hang on them. Often a dog or cat with none of our advanced skills can offer more comfort to our neighbor than we can. (Think: Would you rather live with Shakespeare or a cute puppy?) Each of us has the ability to give only a little bit of joy to those around us. I would wager Eurydice gives as much as any person alive.

As I write these words, it is not clear to me that Solomon has learned all he might have from his 10-year investigation into diverse parenting. He has reached several convincing conclusions, to be sure: “Hard love is in no way inferior to easy love,” he writes, and “Diversity is what unites us all.” While not risky, these observations are well-articulated and abundantly corroborated. I embrace especially his point on struggle: “The happy ending of tragedies,” he notes, “have a dignity beyond the happy endings of comedies.” Warriors at heart, we cherish what we’ve gone to battle for far more than what’s been handed to us with a lifetime warranty and a lollipop.

Advertisement

It’s when Solomon turns to his own life after hundreds of pages of publicizing the diverse, disabled, and combative lives of others that his unreconstructed conventionality emerges most obviously—and his cowardice. When all is said and done, Solomon mainly wants to bank an A-1 baby. While quickly regretting the “economic privilege” required for the engineering of his perfect offspring, he becomes “extremely deliberate about the egg selection.” Having prepared the ground for his reproductive missions by marrying his partner in a “shot-gun wedding” at the ancestral estate of the late Diana, princess of Wales, Solomon sifts donor profiles, consults attorneys, and flies around the globe to negotiate optimal parenting conditions.

But when the boy is born and needs a not-uncommon 5-minute CT scan, Solomon is ready to flee. Not merely does he panic, but he finds himself “try[ing] hard not to love” his newborn and has visions of “giving him up into [the] care” of an institution. All this within moments of a very small question being raised about the perfection of his child. All this from the author of Far From the Tree.

The incident ends up being a tempest in a teapot; Solomon’s son is entirely normal and discharged pronto to one of his homes in Manhattan. And yet weirdly enough, Solomon sees himself as an “adversity” survivor as a result of this experience: “I felt something brilliant and terrifying for my son as he lay in that Star-Trek-like CAT scanner,” he says. In his own eyes, Solomon has joined the company of heroes: At previous moments, he admits in the last sentence of his book, he’d sometimes doubted the sanity of “heroic parents,” but now he was “ready to join them on their ship.”

121127_DX_eurydice_6
Eurydice

Courtesy Cristina Nehring.

It’s hard to imagine that parents of disabled and dying children will recognize Solomon’s “ship” as their own. Regardless, Solomon’s kids (and he now claims three more via the sperm donations he or his partner have made) still have many opportunities to teach him what his interview subjects have only done in part.

I, too, am a slow learner. Every day, Eurydice has a thousand things to teach, and every day I assimilate precious few. One thing I have grasped though is that the more I do, the more I can do. Raising my girl taps resources that did not exist five years ago. In many ways, she’s still a baby—not yet continent, not yet talking. Some days I fear she will go from being a baby to being an invalid. Medical risks are legion with Down syndrome, and they come on quickly.

There are reasons to think the future could be harder—not easier—than the present. But while certain experts (repeatedly quoted by Solomon) have suggested that this leads to “chronic sadness” in parents of children with Down syndrome, I find it leads to “chronic carpe diem”—a chronic desire to seize the day and wring the best possible from every moment—and from myself.

Eurydice modelling Christina's lingerie in their studio apartment.
Eurydicemodeling Cristina's lingerie in their studio apartment

Courtesy Cristina Nehring.

I know I will not be able to “pass a baton” to Eurydice the way parents sometimes hope to do with their kids. She is not going to take over my “business” or answer my calling: If I want to sweeten the world a bit through writing, I’d better the hell get down to it myself—the constraints be damned. My child is no baton-bearer; she has her own scepter.

I also know she’s unlikely to grow up entirely: She’s unlikely to move out at 18 and leave me to my own adventures, so I try to embark on those adventures right now. Toddler in tow, I take every travel assignment I can get from an editor, board every train, scale every limestone fence, and dip my nose longingly into every long-stemmed tulip. It’s probably a good modus operandi for all of us.

The joy Eurydice takes in each detail of life is the most infectious quality I’ve ever known. When she flings her arms around my neck as she does every day, every night, my most recurrent fear is no longer relapsing cancer, no longer early dementia or heart disease or hearing loss—or even the fact that Eurydice is growing up too slowly. It is a testament to how radically this child has transformed me that my most recurrent fear may be that she’s growing up too fast—that one day she could be too mature to give me those massive, resplendent, full-body hugs.

If the two of us can avert that catastrophe, I tend to think we can avert them all.

  Slate Plus
Slate Picks
Dec. 19 2014 4:15 PM What Happened at Slate This Week? Staff writer Lily Hay Newman shares what stories intrigued her at the magazine this week.