Nearly two years ago, I wrote a glowing review/reflection on a book that was new in hardcover by a writer named George Estreich. It’s the story of a little girl with Down syndrome growing up with her stay-at-home dad, her mom, and her older sister. It’s also a story about families and stories and the way we make meaning out of our lives. I loved it.
In the past 18 months George and I have become virtual friends, sharing thoughts and reflections on parenting, Down syndrome, prenatal testing, and writing through email and blogposts and the like. Penguin/Tarcher recently picked up his book and released it in paperback version. When I received a review copy, I planned simply to read the new Afterword, but I couldn’t help myself, and I read it cover to cover again. All this is to say, I highly recommend The Shape of the Eye for anyone who likes thoughtful, beautiful writing about what makes a family a family. This week, this blog will offer an interview with George Estreich in two parts along with a book giveaway. But I thought I’d whet your appetite with some of my favorite quotations from the book itself:
It was never Laura we regretted: she charmed us from the beginning. It was the new life we feared.
We live in the labyrinth of Normal. If we could only climb the walls high enough, we could see the maze whole, for the pointless thing it is. But we cannot. In meetings like these, my mind wanders down corridors both dimly lit and familiar. I think about the absurdity of assenting, again and again, to every abnormality, to the obvious fact that Laura is different, so that we can get services to help her develop more, well, normally.
I was beginning to understand that the two narratives–hope and tragedy–could not be reconciled. it was not just that they were starkly different. It was that they were not talking about the same thing. One kind of story was about an actual individual. It described that individual’s trajectory through a particular time and in a particular place. The tragedy, though, was typically a projection: it imagined what an individual’s story might be like.
At the hearts of this projection was the list of diagnostic features. The tragedy is the list in motion: if the list is a snapshot, the tragedy is a movie. But then, if a child is only the sum of medical abnormalities–retardation, heart defect, intestinal atresia, obesity, torticollis, hpypotonia, leukemia, early-onset dementia, shortened life expectancy–then what story, but a tragedy, could she possibly have?
That equation of intellect with human value is difficult to see, and likely impossible to transcend. But it is reflected in our jokes, our toys, and our movies, and if we choose to engineer future human beings, it will be reflected in their bodies. Our technology lends force to what we believe.
Down syndrome did not transform our lives, so much as expose its basic terms. That we struggle to understand each other sometimes, that the nonverbal cues are often louder and clearer than the spoken ones, seems only a special case of what is commonly true.
That we will recognize not a population of “typical” children and a population of “special” ones, but a single population that varies widely in ability but not in value.
I hope these little snippets will convince you that The Shape of the Eye is well worth reading, and check back in later this week to hear more from George.