Telling the Story: George Estreich’s The Shape of the Eye

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.

His book tells their story, now that they know it. And it is not a bleak story at all, but rather an experience with an intelligible and even hopeful shape. A story of continuity, as healing happens from mother to son and son to daughter, as a “Down syndrome family” becomes a family, plain and simple, with two daughters, one of whom has Down syndrome:

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.

About Amy Julia Becker

Amy Julia Becker writes and speaks about family, faith, disability, and culture. A graduate of Princeton University and Princeton Theological Seminary, she is the author of Penelope Ayers: A Memoir, A Good and Perfect Gift (Bethany House), and Why I Am Both Spiritual and Religious (Patheos Press).

Comments

  1. Heather Seal says:

    I’m excited to read this book. I’ve only heard amazing things about it.

  2. Marilee Eaves says:

    I love the title of Estreich’s book.

  3. Doozeedad - meriah says:

    I’m looking forward to reading it! And – I posted a little review of your most awesome book on my blog today (along with a giveaway for it, of course, as I’m buying the kindle version!). I would copy and pSfe the direct link but I’m writing this on my phone over my daughter’s nursing (or dozing?) head and it’s just impossible…

  4. Now you know how I felt when I read your book. As a technical writer, I am often in awe of the ability to engage the reader in the story and describe the sensory details that make it come to life. For a writer of prose, I suppose it would be about the same to read the work of a poet.

    I’m looking forward to reading it.


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