I don’t have the words to convey how much I liked Geore Estreich’s book, The Shape of the Eye: Down Syndrome, Family, and the Stories We Inherit. Estreich is a poet, and his simple yet elegant prose tells the story of his daughter Laura’s entrance into their family. It details the harrowing months following her birth as they struggled to help her through heart surgery, help her learn to eat (Ranch dressing, Estreich claims, was the key), and then the more mundane years that followed, with Estreich at home with Ellie and Laura trying to write poetry and his wife Theresa at work as a scientific researcher.
In the midst of the story of family life, Estreich weaves together a narrative of his own family history (his mother’s Japanese origins called into question Laura’s diagnosis at first, due, well, to the shape of her eyes, leading both to the title of the book and a series of miscommunications between Estreich and his mother), his life as a father and husband and writer, and research and reflections upon Down syndrome.
Here he writes about the days after Laura’s diagnosis:
We had not only lost our own story, but the possibility of any story. A story, in its very structure, offers comfort. Even the bleakest story has a curve of action–a beginning, middle, and end–and so it offers the possibility that experience can have an intelligible shape. But having a child with Down syndrome did not map onto a rising or falling curve of action; the event derided every curve. It spoke of chance, not continuity-in the original meiotic error, by which the extra chromosome came to occupy an egg or sperm, and now, in the array of dire probabilities the pamphlets disclosed. So we felt clueless, benighted, deceived. For months it had been true. We had not even known what our story was.
To write a book about a child with Down syndrome, as that child grows, is to understand that life is water. It runs, slips, evaporates, changes course, and what seems like an eternal truth–a child on a ventilator, a child who won’t eat, a child who hasn’t spoken–evaporates, leaving a changing present . . .
For a year, I had felt like a parent to one child, and a triage nurse to another. In the shock of the diagnosis, I saw only the differences between them: the perforated heart, the changed brain, the slack muscle tone, the extra chromosome. And yet these facts were as deceptive as they were verifiably true. The differences were real, but their meaning was less fateful than I had supposed. This was true, I was learning, not only for hearts and brains, but for chromosomes as well.
When Laura is three years old, Estreich writes:
How, then, to tell Laura’s story? How to explain the way my vision has changed? Because by then, Laura had long been one of us, a fully vested member of our family, and the happiness she brought us was real, without dilution or asterisk. She was a part of our story. Her trisomy had complicated the story, from heart surgery to speech therapy. But her genetic beginnings–on paper, far less promising than Ellie’s–had resulted in no less happiness. The genome is the beginning of the story, not the end.
George Estreich has written Laura’s story, and in so doing he has shown us her story as a story of a fellow human being, a fellow daughter, sister, child, from beginning to end.