An excerpt from Dani Shapiro's memoir about spirituality, Devotion.

An excerpt from Dani Shapiro's memoir about spirituality, Devotion.

An excerpt from Dani Shapiro's memoir about spirituality, Devotion.

What women really think.
Feb. 2 2010 11:14 AM

My Son's Illness Made Me Reconsider Religion

An excerpt from Devotion: A Memoir.

Devotion: A Memoir by Dani Shapiro.

Arthur Miller takes the bus, the real estate agent in Connecticut said, killing four birds—writer, Jew, Democrat, New Yorker—with one stone. The bus being the sole mode of public transportation to New York City. Arthur Miller being a resident of one of the towns in which we were house-hunting. Arthur Miller takes the bus became such a frequent refrain that I began to envision a blow-up doll of the great playwright propped up in the back seat of the Bonanza Bus from Southbury to the Port Authority.

In truth, my husband Michael and I had no idea what we were doing. We were flying blind—amazed that the proceeds from the sale of our Brooklyn brownstone could buy us these ten acres, this house. It was safety, security, peace of mind we were after. It had been a rough couple of years. The plain facade of the saltbox, the hand-split wood roof reflecting the autumn light, the gentle slope of the land—it spoke of a simplicity that seemed not only preferable but essential to our family's well-being. But beyond the proximity of Arthur Miller, we knew next to nothing about the place where we were setting down our roots. We were going on instinct. This sense of rightness about the house was a feeling—nothing more.

Before we made a final decision to leave the city, we made an appointment for our son Jacob to see an expert in early childhood development. Jacob's speech was still lagging, and he had been the last of his peer group to learn to walk. The medication he had taken—the stuff that had saved his life—had a sedative effect. For a year of his infancy, he had essentially been tranquillized. If he was going to need intervention—speech therapy, occupational therapy, who-knew-what—then maybe we should stay in the city where I imagined such things were more readily available.

After spending several hours with Jacob doing a comprehensive evaluation, the doctor called us into his office.

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"You realize that most children who survive infantile spasms are eventually diagnosed with pervasive developmental disorder," he began. And then—after a brief, sadistic pause: "Jacob is fine. He exhibits no signs of autism."

We moved into the house on a cold, muddy day in early April. I was about to turn forty. Jacob was about to turn three. Michael—heading towards fifty—had switched careers from foreign correspondent to screenwriter. I had spent the previous two years struggling to write a novel. The future was unclear. We had no money to speak of, nothing resembling financial security. Two writers, post-9/11 refugees, strangers in a strange land. We should have been petrified—we should have questioned our own sanity. But we had learned something about what was worth being petrified about, and what wasn't.

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The summer after we first moved to Connecticut, we were invited to a barbecue by the lake. I saw a boy—he must have been seven or eight—running around with the others. He looked like Samson, his raggedy mane of blond hair reaching all the way down his skinny back to his waist. This was Connecticut, not Berkeley. The boy stood out.

One the women saw me notice him, and filled me in. "He was very sick as a baby," she said. "He very nearly died. His parents became born-again. They made a promise to God that if he saved their son, they would never cut his hair, until he was old enough to cut it himself."

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I watched the boy whooping it up with his friends. His parents, who had been pointed out to me, were a good-looking couple, blonde and rangy. The wife leaned back on a beach chair, balancing a gin and tonic on one tanned knee. It would be years before I exchanged a single word with her, but still—born-again Christian that she was, lapsed Jew that I was—I felt like I knew her. I searched the shoreline for Jacob, my toddler. He was crouched down, examining a rock, his back curved, as if in supplication.

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When we were still living in Brooklyn I craved comfort food and cooked it every night. My favorite was a recipe for meat lasagna that included a cup and a half of heavy cream. Also high on the list was spaghetti carbonara: bacon, garlic, eggs, and more heavy cream. I wasn't concerned about calories or fat content. Only with flavor, texture, satisfaction. We opened bottles of good red wine usually reserved for special occasions. Dipped hunks of crusty French bread into leftover sauce. Cleaned our plates. Ate dessert.

During the days, I had begun to work on an assignment for The New York Times Magazine. Jacob had spent one night when he had been ill under observation in the pediatric step-down intensive care unit at Mount Sinai Hospital—the hospital on the Upper East Side where both he and I had been born. The ward was filled with very sick kids who mostly lived there. Two girls were awaiting heart transplants; the older one had been in the hospital for nearly a year. A seven year old boy lived along with his stuffed animals inside an isolation tent with tubes coming out of his stomach. The halls and doors of the step-down unit were decorated with the children's art projects: watercolors of rainbows, stick-figure drawings of families. Some of the rooms were equipped with video monitors so that they could communicate with their parents at home.

While Jacob dozed, I had wandered the halls, talking with some of the kids. During the months that followed, I often found myself thinking about them. Eventually—after Jacob was well again—I called an editor at the Times and got an assignment to write a story. I started spending all my days at the hospital. I wore a special volunteer identification tag—though everyone on the unit knew I was there as a reporter—and made my way in and out of the children's rooms. I sat in on their tutoring sessions, hovered in their doorways as the doctors made their rounds. The two heart transplant girls had become close. The eleven year old took me aside one day. Her long dark hair streamed in waves down the back of her pink bathrobe. Her eyes were huge and brown.

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"It's hard to live here in the hospital, but do you know what? I feel really bad for my friend," she told me. "She's only nine. She hasn't had much of a childhood yet."

There in the step-down unit was the invisible veil that separates the healthy from the sick. It was impossible to be in that hospital ward full of children and push thoughts of Jacob from my mind. I remembered the way that very same veil had settled over us, like the sheerest netting, just a year and a half earlier. On that long ride home to Brooklyn from the neurologist's office, I had looked out the car window at the Brooklyn Bridge, a sight that had always made my heart lift. Now, my heart was a stone in my chest. The water below was gray, churning. The cars surrounding us were filled with lucky people going about their daily business. They were thinking about what to pick up for dinner, or an annoying thing a colleague said at work. They had no idea how good they had it. And we—we had crossed over to a place where only one thing mattered. Seven out of a million. My consciousness, the whole way I saw the world, had been changed in an instant.

I saw Jacob in the face of every child in the step-down unit. I saw Michael and myself in the stooped shoulders of each parent pacing the halls. We had come so close to devastation. We had been dangled by our feet over an abyss—and then brought back. Our veil had lifted—but I knew the truth, which was that the veil hovers, always. Its gossamer netting is part of the fabric of the sky. It can descend in an instant, on anyone, at any time. The trick—if it is a trick—is to know this but not let it stop you.

One morning, a few weeks into the reporting, I commuted from Brooklyn to the Upper East Side, as I had every other morning. I walked uptown on Fifth Avenue and into the Mount Sinai lobby. The guard knew me by now, and waved me through. But I couldn't get into the elevator, couldn't press the button for the sixth floor. I sat in a plastic chair and waited to feel stronger. I felt like I might come apart—my skin dissolving, with nothing to protect me. I waited in the lobby for a while—that same lobby that I had walked through as a woman in labor, and walked through again with my healthy infant bundled into a car seat. But the feeling didn't pass. I turned around and went home.

I called my editor at the Times and told her that I couldn't do the story—I just couldn't do it. These were families who had it so much worse than we ever did, even in our darkest hour. But I had no journalistic distance. Even with my volunteer badge on, striding in from the outside, I wasn't an outsider. I couldn't simply come and go. Each time I left the step-down unit and re-entered the land of the lucky, my inner voice screamed: Why them and not us? Why such terrible maladies? Why should children suffer? Why had we been spared? Why, why, why?

Months later, I called one of the nurses in the step-down unit to ask about the heart transplant girls. The eleven year old had received a heart, and died during surgery. The nine year old, alone in the hospital without her friend, was still waiting.

And so I continued to cook. I bought heavy cast-iron casseroles in bright, cheery colors: canary yellow, royal blue. Stews bubbled on the stovetop. Braised beef, lamb shanks, chicken with hot spicy sausage. Handmade pasta stuffed with a mixture of cheese and black trumpet mushrooms. Michael and I gained ten pounds between us. I clipped recipes, shopped at farmers markets, tracked down rare ingredients. Small terra cotta pots of herbs lined my kitchen windowsill like toy soldiers. Music played. The back door flung open to the garden below. Jacob toddled around the kitchen, banging wooden spoons. The wafting scent of sizzling garlic, sauteed onions lured Michael from his third floor study. Daddy! Family hug! Jacob had learned to say. Family hug! His high sweet voice called out. Day after day, Michael hoisted Jacob up in his arms, and the three of us held each other in a tight embrace. All the while, far above our Brooklyn brownstone, the veil floated in the sky.