The Shape of the Eye: our diagnoses do not define us

The Shape of the Eye was originally published in 2011. This Spring, it was re-issued in paperback and is enjoying the attention it deserves. A memoir by George Estreich about many things, but prompted by the birth of his daughter Laura, it has much to share for all of us.

The book’s inspiration, Laura, happens to have been born with Down syndrome. The title comes from one of the signs that suggested to the medical team that Laura may have the condition. In submitting my essay for Gifts II, I remember one of the editorial comments shared with all contributors was the prevalence of “almond-shaped eyes” in the submissions. In Laura’s case, the shape of her eyes ultimately became the title of Estreich’s memoir (or as Laura considers it, her book).

The first third of the book, however, focuses less on Laura having a triplicate of the 21st Chromosome and more on the efforts to ensure she would simply live.

Like almost half of all children with Down syndrome, Laura was born with a heart defect. So was my daughter; she had two murmurs. However, my daughter fell in the quarter of children with Down syndrome who did not need surgery to repair her heart defect. Laura was on the other side of that line, requiring surgery, with attendant complications occurring.

Being spared this experience with my own daughter, I appreciated Estreich’s detailed account of the efforts needed, both by the medical team to repair Laura’s heart and by Estreich and his wife to advocate for their child while in the hospital. Estreich further made me appreciate the complications and developmental concerns associated when nutrition is provided through a nasogastric tube rather than nursing and eating. Again, something we did not experience, but one Estreich makes real to the reader.

The Shape of the Eye follows a chronological path, with stories from the past interspersed in an otherwise linear telling of Laura’s first several years. For this reason, the memoir reflects the focus I have heard from many families whose child was born with medical conditions requiring surgery: the focus is not first on “the Down syndrome;” the focus instead is on getting their child to live, then the family deals with the Down syndrome.

While the narrative structure, then, focuses on Laura’s medical issues at the beginning of her life, the central theme of The Shape of the Eye is that “reducing a child to medical facts is a fiction.” Consistent with the message shared in a previous post of Kierkegaard’s maxim that “when you define me, you deny me,” Estreich writes, “Every diagnostic list, by definition, sets the child with Down syndrome apart.” Medical diagnoses are reductionist: they reduce the full patient down to the simple diagnosis. But, we all know from our experience that we are more than whatever diagnosis we may have been given: my father, who died from a blood disorder, was not defined by that blood disorder; Estreich’s father, who died of cancer, is shown in Estreich’s writing to be much more than just the cancer; and, Laura, again through Estreich’s writing, is shown to be a full person, who charms you.

The Shape of the Eye is replete with medical terminology, including an informative historical review of the syndrome’s namesake, John Langdon Down. But, what you will come away with is a story about an actual individual, not just a story of diagnosis told by medicine. You will smile as Laura’s classmate imitates Laura’s way of speaking and explains to her father how “that’s how you say ‘yes’ in Laura;” you will laugh at Estreich’s goofiness with his children and misadventures at being a stay-at-home dad with half-finished home renovation projects; and, you will seethe when Laura’s mom answers THE question in the negative–no, she did not have prenatal testing–and the questioner asks “why not, in disbelief, almost in anger.” By the end, you may share the irony Estreich describes of medical advances making it so that Laura’s life could be saved, while medical advances in prenatal testing are proceeding so that lives like hers can be avoided.

In an interview about the book, Estreich shared how many, if not most of his readers are others who have a loved one with Down syndrome or have another connection. But, hopefully, that will not remain the case. If you like learning new things and doing so while reading beautifully written prose and, occasionally, laughing out loud, then you will enjoy The Shape of the Eye. Let me emphasize how beautiful the writing is: Estreigh is a published poet and his memoir is a wonderful read.

To finish, I wanted to end where Estreich does in the new Afterword to the paperback edition. Through Estreich’s writing about Laura’s medical complications, she approaches the brink of death. While reading, I did not have any thought about Down syndrome. Instead, I was just reading about a little girl in a precarious position. And, even though I knew she made it–I mean her photo at an older age is on the cover of the book–still, at page 37, I made a note in the margin that I found myself pulling for her to make it through. Fast forward to the Afterword, George writes, “One of the best parts of being Laura’s father is seeing how other people root for her.” Well done, George.

Special thanks to Alison Piepmeier for sending me my copy of The Shape of the Eye as a winner in her book give away contest. The contest is closed, but please enjoy her blog.