"A Doorway to a New Life": A Conversation with George Estreich About Down Syndrome, Writing, and the Stories that Make a FamilyIs Down syndrome "bad" or "hard"? George Estreich reflects on writing, family, and life with his daughter Laura.

As I wrote earlier this week, George Estreich's The Shape of the Eye is a lovely memoir of a father who is telling and retelling the story of his family after his second daughter Laura has been diagnosed with Down syndrome. Yes, this book will be of interest to parents of children with special needs, but between the beautiful writing and thoughtful analysis of language, culture, and family history, this book is relevant and compelling for anyone who likes to think about what makes us who we are. Just last night, I said to my three children, "After we read stories, we have time to pray together as a family." Penny's head snapped up. "Not as a family, Mom." "Why not?" I asked. "Because Dad's not here." The Shape of the Eye testifies to the way every member of a family matters to the whole. I'm grateful to George for taking the time to answer my questions about writing this book, making meaning in life, and whether Down syndrome is "bad" or "hard."

Upon rereading this book, I was struck by your thoughts about the importance of having a story to tell and the ways in which a child with Down syndrome disrupts a family story almost by necessity. The Shape of the Eye, then, becomes your attempt to demonstrate the ways in which a child with Down syndrome rewrites a family's story. And yet, in your case at least, it seems that Laura enhances the story that was already in process–the story of your relationship with your mother, the story of your life as a writer, as a father, as a husband, the story of your bouts of depression. Did Laura change your story or simply amplify it?

Both. I think any child changes a family's course, and Laura was not just any child. In the book, I tried to bear witness both to the turmoil after her arrival, and to the ways in which we were transformed.

Your question touches on something that drives the narrative: how do you find a coherent story in the wake of disruption? For me, Laura's arrival divided my life into Before and After, or seemed to. That's why the book loops so insistently into the past, into my family history, into medical history. The book is about my search for continuity, and is the result of that search.

Down syndrome, the biological fact, brought real challenges: Laura's heart defect, for example. And yet the more enduring challenge was conceptual. How do I think about Down syndrome and a daughter at the same time? How do I face the misunderstandings I discovered, both within me and within the culture? The book tells a story in chronological order, but the real journey is internal; it begins with an unexpected child, and ends in different ideas about who counts as human, and who belongs.

You also write about chance (p 16, for instance) and the desire to find and make meaning out of the events of our lives. As a Christian, I tend to assume meaning exists even within "chance" encounters and events. Does art or being able to craft a story create meaning for you? If so, in what ways?

If I were an atheist (as I was cheerily mislabeled by one blogger), then I could be categorical about this. But I'm not, and I can't. I'm not a Christian, and I don't necessarily assume that coincidence disguises design. I don't know one way or the other. I'm pretty sure that if there is a divine plan, I'll be the last one to get the memo.

So that leaves me with story. Story selects and organizes life. It translates life into language; it charges events with meaning, or potential meaning. It invites the reader to interpret that potential, thus multiplying the possible meanings. (Ironically, Laura's life began with my being overwhelmed by possible meanings: what was I to think about my daughter? And now, twelve years later, having written a book, I've returned to an infinite sense of possibility, but in a different way.)

I knew very early in the writing of the book that I wanted it to be primarily narrative, and that I wanted to write in prose. There were practical reasons for this. For better or worse, prose is normative in our culture, so you can reach more people than you can with poetry. Also, prose lends itself to a hybrid approach. A prose narrative can integrate analysis, history, reportage, medical information, criticism, even advice. I very much wanted to write a hybrid kind of book, a book that ranged widely, using story as its base. In so doing I was able not only to figure out what I thought and believed about Down syndrome, but to share the results of that process of others.

I could also include metaphor and image, the building blocks of poetry. So, to refer to your previous question, this was one way to establish continuity with the past: the shift from poetry to prose was less the radical break than it seemed, more a way to apply the past's experiences to present challenges.

Early on in the narrative, your wife Theresa says, "Cancer was bad news. Down syndrome is only hard." In what way has Down syndrome been hard? Has it also been "bad" or "good" for you or for Laura?

The first year was hard, as the book describes. Sometimes I wonder if, in focusing on Laura's first year, the book skews the portrait of our lives towards difficulty and grief. (That's one reason I wrote a new Afterword for the new edition: not just to reflect on questions of disability and technology and education, but also to balance the story, to give a sense of how we are now.)

In daily life, what's hard are transitions, like getting out the door for school. Homework can be difficult; we've learned ways to work with teachers so that assignments can be modified for Laura, and each year gets a little easier, but there's definitely work involved. But most of the time, we can get into a decent rhythm of school and work.

When Laura was younger, and I was too, what was hard was dreading the future. I suppose that with adulthood not that far away, I should be dreading that too, but the fact is that the challenges are never what you think anyway.

As for Down syndrome being "bad" or "good": it's really hard for me to think of it in those terms. It's part of who Laura is, and since Laura is part of who we are, Down syndrome is a part of us too.

One reason I used Theresa's words, and emphasized them by placing them at chapter's end, was that they distill a crucial point: Down syndrome is not a disease, and cancer is. So it was easy to see cancer as something other, an invader in my father's body and in the life of my family of birth. It was bad news. I still regret that my father was taken from me, that he didn't get to meet his granddaughters, that he didn't have the opportunity, as my mom has, to see Laura and come to know her.

But I don't see Down syndrome that way. A doorway to a new life, maybe, as I wrote in the book, but not bad news—though it seemed that way in the beginning.

Check back in tomorrow for Part Two of this interview, and leave a comment on this post for a chance to win a free copy of The Shape of the Eye. For more information about George and the book go to georgeestreich.com

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