Down Syndrome, Family, and Belonging: A Review of The Shape of the Eye

Almost four years ago, I gave birth to my sixth child, a baby boy who took my breath away with his otherness. My husband and I learned within days of his arrival that our son, Finn, had Down syndrome, and we set upon a path we had never imagined. In the time since Finn’s birth, as I’ve searched for wisdom and connection, I have read many accounts by parents who are also raising children with Down syndrome. None of those stories, however, have resonated with me like George Estreich’s new book. The Shape of the Eye tells of raising a child with Down syndrome, but also of family, writing, the vast landscape of parenting, and most of all, what it means to belong.

When Estreich and his wife, Theresa, welcomed Laura, their second daughter, into the world on a sunny day in February 2001, they began a journey, both frightening and illuminating. In their newborn daughter’s face, the doctor sees ambiguity:

“I notice the eyes are slightly almond-shaped.”

“My mother is Japanese,” Estreich replies.
So begins an exploration of genetics, race, inheritance, and family — the provocative yet ordinary elements of this book, which won the 2012 Oregon Book Award for Creative Nonfiction. Within two weeks of Laura’s birth, a genetic test confirms what doctors suspected: Laura has Down syndrome. Furthermore, her condition is complicated by a severe heart defect, which would require surgery within months of her birth. Estreich writes, “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.”

Estreich grieves for the “phantom” child, the child he’d imagined through her nine-month gestation. He struggles over how to tell people of Laura’s diagnosis, and he worries about the future. Would Laura go to school? Would she have friends? Would she need assistance with everything she did?

Seeking solace, Estreich begins to gather information and learn all he can about Down syndrome. He consults sources both popular and obscure, parenting guides, medical texts, and scholarly articles, and asks questions often asked by parents in this situation: What is Down syndrome, both medically and clinically? How will it manifest in my child, and in our family? Following this initial research, he writes:

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.

Estreich encounters these contrasting stories of children with Down syndrome throughout the literature, and decides to delve deeper, to ask larger questions. He explores where perceptions of Down syndrome originated, and how they have been shaped over generations. This research, of course, leads him to John Langdon Down, the man who first categorized people whose outward characteristics are now associated with the syndrome. Down worked in late nineteenth century England, and ran the Royal Earlswood Asylum for Idiots and Normansfield, both institutions for people with developmental disabilities. Down believed that the “idiots,” as they were called at the time, housed in these asylums were, in fact, products of racial “degeneration” in utero. They did not resemble their parents, Down reasoned, but they did resemble each other. From this observation, he coined the term “Mongolian idiots,” and thus arose the spurious links among race, inferiority, and particular physical characteristics. These links held strong for nearly a century, until scientists learned of chromosome pairs and of trisomy 21 (a tripling of the twenty-first chromosome).

Estreich weaves this fascinating social history into his own family story. Integral to both narrative threads is the concept of inheritance. We inherit genetic material and physical traits, but we also inherit ideas, fears, expectations, and misconceptions. How have stories and theories about Down syndrome affected the way we see this condition? How, Estreich asks, has his own upbringing shaped him as a person, husband, and father? How have his parents’ histories informed their perceptions and the stories they have passed on to their children and grandchildren?

He concludes, wisely, that enlightenment is an ongoing process. It is easy, today, to dismiss nineteenth-century theories as wild and erroneous, yet, Estreich cautions, we should not be too complacent in our contemporary perceptions of Down syndrome: “So we are imperfect and struggling too, making sense of the meanings we inherit — an effort that’s difficult, messy, necessary, and still unfinished.”

The Shape of the Eye is meticulously researched, introspective yet not sentimental, and written in absorbing and rich prose. An English professor and poet, Estreich left his academic career to raise his two daughters, Ellie, his eldest, and Laura. Accordingly, he tells his family’s story from the still-unusual perspective of an at-home dad. Estreich’s gift for writing is extraordinary, his prose wry and evocative. I found myself re-reading many passages, rolling them over in my mind, savoring and absorbing each word. For instance, on day-to-day parenting, he writes:

There is an irritable exhaustion specific to primary caregivers, in the late afternoon, when you are sleep-deprived, caffeine has lost its power to revive you, and you have not had childcare for days. You have already played Chutes and Ladders and Hi-Ho! Cherry-O and Masterpiece, and each time it has taken more time to find and set up the game than it has to actually play it, and somewhere beneath the increasingly snappish exchanges between you and your children, your brain is sinking to the benthic depths of four o’clock, where the last few caffeine molecules, like phosphorescent sea-creatures, are slowly winking out.

Over months and years, Estreich realizes, as many parents of children with Down syndrome come to realize, that life goes on, and that Down syndrome is neither tragedy nor blessing, but one of many possible variations in an ordinary life. All parenting involves an adjustment in expectations; no parent receives exactly the child they anticipate. Estreich discovers that raising a child with Down syndrome does not mean the end of “normal” family life, nor does it mean living under a perpetual cloud of bleakness. Laura grows, as children do. She makes friends, goes to school, confounds her parents and elicits their pride. Laura’s struggles and achievements prove no more or less profound than those of any child, and raising her proves not so different, after all, from raising her older sister, Ellie.

Our second daughter taught us the responsibilities we had accepted when we chose to have our first. Laura’s chromosome count taught me that every child is a genetic risk; her heart defect taught me that the risk is mortal; and years later, remembering an infant I did not know, I learn — again — that it is not only the chromosome, but our response to it, that shapes the contours of a life. Every tube, every wire, the violent nurture of surgery and the gentler nurture of feeding therapy, all working towards the clear pronunciation of a word: these hinged on the belief that her life was worth saving in the first place, then nurturing to its fullest potential. Everything we have done, teaching her to eat, to speak, every act of ambassadorship and interpretation, presumes the uncomplicated belief that her life is radically, democratically valuable. If we did not, on some level, believe that, we would not even have taken her home.

Now, nearly four years after my own son was born with Down syndrome, I too have moved so far beyond the fear and grief I first experienced that, looking back, those days seem dreamlike. As Estreich says of Laura’s diagnosis, “For a long time, I thought we had learned a difficult fact. But we were really at the beginning of a conversation.”

Finn, now an active, determined, moody, mischievous, inquisitive preschooler, has changed and expanded our family in ways similar to our other children, as well as in ways we had never anticipated. By tapping into our compassion and tolerance, and broadening our perceptions about our fellow human beings, Finn, like Laura, is merely and extraordinarily a child.