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Raising Henry

Raising Henry: A Memoir of Motherhood, Disability, and Discovery

Copyright Date: 2013
Published by: Yale University Press
Pages: 352
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  • Book Info
    Raising Henry
    Book Description:

    Rachel Adams's life had always gone according to plan. She had an adoring husband, a beautiful two-year-old son, a sunny Manhattan apartment, and a position as a tenured professor at Columbia University. Everything changed with the birth of her second child, Henry. Just minutes after he was born, doctors told her that Henry had Down syndrome, and she knew that her life would never be the same.

    In this honest, self-critical, and surprisingly funny book, Adams chronicles the first three years of Henry's life and her own transformative experience of unexpectedly becoming the mother of a disabled child. A highly personal story of one family's encounter with disability,Raising Henryis also an insightful exploration of today's knotty terrain of social prejudice, disability policy, genetics, prenatal testing, medical training, and inclusive education. Adams untangles the contradictions of living in a society that is more enlightened and supportive of people with disabilities than ever before, yet is racing to perfect prenatal tests to prevent children like Henry from being born. Her book is gripping, beautifully written, and nearly impossible to put down. Once read, her family's story is impossible to forget.

    eISBN: 978-0-300-18429-7
    Subjects: History, Sociology

Table of Contents

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  1. Front Matter
    (pp. i-vi)
  2. Table of Contents
    (pp. vii-viii)
  3. Acknowledgments
    (pp. ix-xiv)
  4. Prelude
    (pp. 1-2)

    In the picture we’re dancing. He’s slightly out of focus, illuminated by a sunbeam coming in from the window. His expression is pure delight. I’m off to the side, my face in shadow. But I’m smiling too as I hold him tightly with one arm. The other arm is outstretched, our hands clasped as I lead him in this joyful dance.

    This is my favorite picture of Henry and me. It was taken by Heather, the pricey child photographer we hired after seeing her work in a local magazine. When we got the proofs, each more beautiful than the one...


    • Arrival
      (pp. 5-12)

      There are no photographs of that day in the labor and delivery room where I first held my new son. When his older brother, Noah, was born, I’d started taking pictures the minute I could sit up, finding his scrawny limbs and misshapen red face indescribably beautiful. Henry had the same scaly newborn feet and shock of dark hair, but there was something about him that didn’t quite make sense to me. Or perhaps I knew all too well what I was seeing. And neither my husband, Jon, nor I had made any move to pick up the camera.


    • My Favorite Freak
      (pp. 13-16)

      For my twenty-fifth birthday, Jon gave me a book of Diane Arbus photographs, which he inscribed “for my favorite freak.” He was alluding to my growing obsession with freak shows.

      It began as my dissertation topic, but it quickly took on a life of its own that went far beyond the requirements of my academic research. I spent years in archives and libraries getting to know the great freaks of the past: Tom Thumb; The Missing Link, or What Is It?; the Siamese twins Chang and Eng; the giant Henry Wadlow; the Venus Hottentot; Jo-Jo the Dog-Faced Boy. I watched...

    • The Phantom Nephew
      (pp. 17-22)

      They offered me sleeping pills to get through that first night in the hospital. For the soreness, the nurse explained. The pain between my legs was nothing compared to the pain I felt when I thought about my new baby. I had spent much of my career probing the pain of misfits and outsiders. I had pored over their stories so deeply that at times their lives seemed more vivid than my own. I had sought meaning in the suffering of others. Now I wondered whether I had done something to make this baby what he was. Had I imprinted...

    • Learning Curve
      (pp. 23-34)

      Henry spent the first days of his life in the NICU, where doctors monitored his heart, his oxygen levels, and his feeding. One night our pediatrician, the kind and unflappable Dr. Zimmerman, stopped by the hospital on his way home from work. After listening carefully to Henry’s heart, he turned his attention to us. Jon had developed an angry red sty on one eyelid. He hadn’t shaved for days. I was wearing pajamas, my hair pulled back into a tangled ponytail. Neither of us had slept more than a few hours at a time since Henry had been born. We...

    • Christmas
      (pp. 35-40)

      That night we made a feeble effort at recapturing the Christmas we had missed two days before. Jon and I had both grown up celebrating Christmas, although my family is Jewish. My father, whose atheism was formed in outspoken rebellion against his Orthodox grandparents, enjoyed the rituals of the tree, plum pudding, and crackling fire. Our house, which was so often dark and lonely, would fill with friends. Christmas was equally important to Jon’s family, where it included mountains of presents and a late-night visit to church.

      When Jon’s parents heard the news about Henry, they dropped their own holiday...

    • The Feeding Tube
      (pp. 41-50)

      When henry was five days old, we were told that he was ready to go home. The doctors felt that his heart condition required no immediate treatment. Aside from weakness, he had no other medical complications.

      “If he turns blue,” our nurse from the NICU told us, not very reassuringly, “take him to the emergency room right away.”

      Since he could still manage to drink only a few milligrams of formula at a time, Henry would have to come home with his feeding tube. To our dismay, Jon and I were told we would need to learn how to insert...

    • The Nursing Circle
      (pp. 51-56)

      After four weeks, we had to let Rosalyn go home. Precious as she was, we knew we couldn’t have her stay with us forever. While she was there, we could entertain a certain fantasy that our lives were unchanged. We could sleep through the night, knowing she would feed Henry, and we could treat Noah as if he were still our only child. But we couldn’t afford more Rosalyn. And besides, it was time to make a place for Henry in our family.

      The doctors at the hospital had been so concerned about Henry’s weakness that they had discouraged me...

    • What Peggy Did
      (pp. 57-64)

      In the hours after henry was born, the only way I could assimilate the bigger, more cataclysmic news about Down syndrome was by fixating on small things. Would his belly button be an “outie” once the stump of umbilical cord fell off? What if he had the sharp, pointy teeth I remembered from pictures of people with Down syndrome? How would we explain Down syndrome to Angela, our Dominican nanny? Worst of all, I was tormented by the thought that Henry wouldn’t be able to go to daycare with Noah.

      In September, Noah had started attending Basic Trust, a warm,...


    • Aiming High Enough
      (pp. 67-80)

      From the time he was about two weeks old, Henry loved to lie on his back with one arm sticking up, waving his hand in the air. He would stay like this for long stretches, studying his fat, stubby fingers as if they were the most interesting things in the world. I took this pose to be a gesture of self-regard, a curiosity about the possibilities and limits of his own body. But it was also an early sign of socialization. Henry was trying to extend himself into the world beyond his body and was making a gentle request to...

    • Early Intervention
      (pp. 81-96)

      Early intervention threatened the charmed life I had built for myself. Although I had a large office at the university, I had always preferred to work at home. When I started my life as an assistant professor, I quickly found campus to be a place of unpredictable hazards. I had a book to write, and my attention was constantly undermined by chatty office staff and senior colleagues trying to draw me into feuds that had started back when I was in high school. Undergraduates wanted me to hang out after office hours, advise the student vegetarian house, or judge the...

    • Choices
      (pp. 97-108)

      When henry was ten months old, I took him to a baby shower for some colleagues who live downtown. They are both second-generation academics, and I knew many of the guests would be professors. Still, I wasn’t prepared to be greeted at the door by Rayna Rapp, an anthropology professor at New York University and author of a book on prenatal testing that happened to be sitting on my bedside table at home. A friend had given it to me after Henry was born, and I was just getting around to reading it. I was riveted by the introduction, where...

    • Visiting the Front Lines
      (pp. 109-126)

      Bumping into rayna rapp made me aware of the prominent place genetics had come to occupy in our lives. Few people think much about genetics, even as the science races ahead, perfecting techniques for cloning, gene therapy, and detection of disease and disability. But for my family, a small error in cell division changed all of that.

      It started the morning after Henry was born, when a resident from the genetics department knocked tentatively at the door of my hospital room. She wanted to complete a pedigree, a standard family history that traces a patient’s genetic ancestry. I tried not...

    • Cake
      (pp. 127-132)

      Jon and i don’t live in the kind of world where people say that Henry was sent to us for a reason. My mother-in-law, HuEllen, does. In late summer she started planning our holiday visit to Georgia. We would travel there a few days before Christmas and stay through her birthday on December 27. She called every few days to let us know how excited she was. She, and all the people she ran into at the local Kroger, the mall, and church, who just couldn’t wait to meet Henry. She was planning to throw him a big birthday party,...

    • Brothers
      (pp. 133-146)

      Noah first met his brother when Henry was two days old. We knew it would be a short visit since the NICU was an unwelcoming place for a child who was less than two years old himself. Alarming temptations were everywhere, from the wheeled carts stacked with equipment and supplies to outlets bristling with electrical cords, machines that blinked and hummed, and switches and buttons crying out to be pressed, not to mention the tiny, fragile babies struggling for life in their plastic bubbles.

      I had low expectations for this meeting. Unlike some of the girls at preschool, Noah showed...

    • Inclusion
      (pp. 147-158)

      By the time henry was a few months old, I had learned that several children with Down syndrome attended a daycare/preschool less than two blocks from our apartment. From our kitchen window, I could see the red brick walls of the Bank Street Family Center, which offered an integrated program where disabled and nondisabled children attended class together. It had a full staff of therapists, teachers who specialized in inclusive education, and classrooms set up to accommodate children with different abilities and needs. For a child like Henry, who absorbed the doings of his nondisabled peers like an eager sponge,...

    • A Simple Place
      (pp. 159-168)

      Henry was thriving at bank street, and during the fall our life started to stabilize into a predictable routine. Both kids were out of the apartment by nine in the morning. Noah spent the full day at Basic Trust, while Henry did a half-day at Bank Street, then came home for a nap and therapy in the afternoon. We had a wonderful nanny named Angela, who was quickly becoming Henry’s favorite person in the world. Although everything seemed to be going well, I still felt angry and worried most of the time. Whenever I wasn’t dealing with some immediate crisis—...

    • Finding a Voice
      (pp. 169-184)

      I was always disturbed by the silence of freaks. In a traditional sideshow, the performers sat mutely on their platforms while customers pointed and stared. There is a memorable scene in Carson McCullers’s novelMember of the Weddingwhere the protagonist, twelve-year-old Frankie Addams, goes to see the freaks at the state fair. As they gaze at her she feels afraid, imagining they can understand her innermost secrets. And who can say otherwise? Because the freaks don’t talk, it’s easy for Frankie to project her deepest fears and anxieties onto them. But I doubt they were thinking of her at...

    • The Girl Down the Street
      (pp. 185-188)

      More than one memoir about Down syndrome tells the story of the vanishing obstetrician. Having delivered a baby so immediately and evidently imperfect, she doesn’t know what to do. Apparently, abandoning your patient at a moment of postpartum crisis isn’t covered by the Hippocratic oath. So she simply leaves the room, never to reappear.

      My obstetrician didn’t vanish. Dr. Lewis wasn’t there at the birth, but she did surface two days later to tell me she was sorry. What she offered me—the story of the girl with Down syndrome who played with all the other children on the block—...

    • Surprised by Disability
      (pp. 189-210)

      In my quest to learn as much as I could, I had joined two other women for a conference called Best Practices in Education of Children with Down Syndrome. It was way out on Long Island, impossible to reach without a car. When my friend Joanna offered me a ride, I jumped at the chance. Another mom named Sophie and her baby son Jonah came along with us. The conference program looked promising, with panels on speech therapy, literacy, and inclusive education. But I was most interested in the keynote presentations. These would be delivered by two young adults with...


    • Transition
      (pp. 213-226)

      The months before henry turned three were a time of endings and goodbyes. In theory, early intervention serves children from birth to age three. But because of Henry’s birthday, we were told we had to terminate his services in August, when he would be just over two and a half. In New York, children unlucky enough to be born in December have to exit the program in time to start preschool in September. Although Henry would be staying at the Family Center, he still had to transition to be eligible to move on with the rest of his class.


    • Always Something
      (pp. 227-240)

      “It just goes to show ya: it’s always something,” Roseanne Rosannadanna, the irrepressible character played by Gilda Radner onSaturday Night Live, used to say. I had adopted this as my own inelegant motto.

      I couldn’t think of any better way to say it. No sooner did I carve out a perfectly empty day to write than somebody got sick. No sooner did he recover than Angela got sick, or a leak in our apartment forced us to flee to a hotel overnight, or Jon got sent to Miami on a few hours’ notice, and so on in an endless...

  8. Epilogue
    (pp. 241-252)


    I refuse to stir from the deep, velvety sleep of early morning.

    “Mom.” The voice at my ear is soft and insistent. I feel fingers stroking my arm. Kisses brush my cheek. I open one eye, determined not to come fully awake.

    It’s still dark and Henry is standing by my side of the bed, clearly ready to start his day. We’ve tried every trick in the book, with little success at breaking his habit of painfully early rising.

    “IPad?” he asks softly, hopefully. Like every other kid we know, Henry has become an addict, understanding intuitively how to...

  9. Selected Bibliography
    (pp. 253-258)