A mother’s deeply moving account of raising a son with Down syndrome in a world crowded with contradictory attitudes toward disabilities 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 Henry is 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.
|Publisher:||Yale University Press|
|Product dimensions:||5.10(w) x 7.90(h) x 0.70(d)|
About the Author
Rachel Adams is professor of English and American studies at Columbia University, where she is also director of the Future of Disability Studies Project. She is the author of Sideshow U.S.A.: Freaks and the American Cultural Imagination. Adams lives with her husband and two sons in New York City.
Read an Excerpt
A Memoir of Motherhood, Disability, & Discovery
By RACHEL ADAMS
Yale UNIVERSITY PRESSCopyright © 2013 Rachel Adams
All rights reserved.
* * *
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.
I felt a tremendous sense of calm. This, after the bright lights, the shouts of doctors and nurses, pricking needles, hands groping roughly inside of me, the primordial screams of some other woman—but it must have been me—a searing pain, the hot, liquid gush of birth, the sharper more localized pain of being stitched back together. The resident who presided over the birth was an implausibly young man I had never seen before. When it was over, he spent half an hour between my legs, repairing the most intimate parts of my body. The birth had happened so fast he said the tearing was like "road burn," hard to sew up but quick to heal. He finished what he was doing and stepped back to survey his work. Concluding that it was good enough, he told me the stitches would fall out within a few weeks and left the room.
He must have known, but he didn't show it. He didn't say anything about it to me, and I never saw him again. I guess he thought his work was done once the baby was delivered. Breaking the news would be someone else's job.
IN THE STILLNESS THAT followed, a nurse kept moving the baby to different positions, trying to get him to latch on to my breast. His mouth opened and closed weakly. No sound came out. The room was completely quiet and filled with watery winter sunlight.
A pediatrician arrived. She introduced herself and told us she was going to examine our baby. She spread him on a heated table and turned her back. A few minutes later, she wrapped him up and handed him back to me.
"I was called here because your baby has features consistent with Down syndrome," she said. "He's pink and he looks healthy, but we're going to have to take him back to the NICU, the neonatal intensive care unit, and run some tests to make sure his heart is functioning properly."
The world should have stopped.
"I know this is a lot to take in. Do you have any questions for me?"
Of course I had questions. Couldn't you give me just a few more minutes to imagine that my baby is perfect? Isn't every parent entitled to believe that anything is possible for her new child? Why were you in such a hurry to snatch away my fantasy? How could this be happening?
I shook my head.
"I'll be back later and we can talk more then," she said kindly. She let Jon hold our baby for a few minutes. Then she placed him in a wheeled cart and pushed him out of the room.
After she left, the room was still quiet and sunny. I still felt calm. Somewhere beneath the surface, I knew that fear, grief, and rage were roiling. But I was wrapped in a numbing blanket of hormones that invited my body to relax even as my mind started to race.
Once the doctor was gone, I looked to Jon to tell me how to feel. Jon had always supplied the emotional ballast in our relationship. He is sensible and contemplative where I'm reactive and volatile. He had read every word I had ever written, marking the pages with comments and patiently enduring my frustration when I couldn't find a way to express the arguments piling up in my head. I dedicated my first book to Jon, my best editor and my best friend.
When we found each other in graduate school, neither of us could quite believe our good fortune. We marveled at the coincidences that caused our very different lives to intersect. I grew up in a woodsy bungalow in the canyons of Los Angeles, surrounded by my parents' bohemian circle of musicians and artists. There were chamber music concerts in our living room. We took weekend camping trips where everyone went skinny-dipping together. My mother drove a VW bus with flowers painted on the side. Jon came from a small suburb in Georgia where there was a church on almost every corner. His father's parents were Appalachian tobacco farmers, and his mother didn't have an indoor toilet until she was a teenager. Everybody in town was white and Christian, and everybody knew everybody else. What Jon and I had in common were our memories of being lonely, painfully shy children who took refuge in books.
We fell in love while we were teaching assistants for a large lecture class on Shakespeare. We stared into each other's eyes when the professor read love scenes from Twelfth Night. I lent Jon a copy of A. S. Byatt's novel Possession, about a couple of geeky academics who discover evidence of a secret romance between two Victorian poets. Jon invited me to go with him to a weekend conference on Renaissance literature, which seemed like the most romantic getaway I could imagine. Our scribbled notes quickly evolved from sarcastic jokes to heated expressions of desire. The students, who were only a few years younger than we, could see exactly what was going on. Knowing that they were spying on us made our flirtations all the more exciting. We did everything together. We had the same friends and the same interests, and we earned the same pathetically small graduate stipend. Our love was awkward and bookish, and we both quickly decided it was forever.
Thirteen years later, we lived on the opposite end of the country. We had careers and a mortgage. Becoming parents threatened the perfect equality that was so important to how we understood ourselves as a unit. Reality sunk in on the Monday morning after Noah was born, when Jon got out of bed, showered, and put on his suit. He was an associate at a large law firm, his completed dissertation packed away in some forgotten corner of our apartment. The partners had sent an enormous basket of gifts for our new baby, along with plenty of email to remind Jon of everything he needed to do when he got back to the office. I knew he had to go to work, but somehow I couldn't believe it was happening until the door clicked shut behind him. I sat there holding Noah, stunned by the realization that I was a mother, which meant that I would be left alone to care for this strange baby wriggling in my arms and threatening to cry.
I disliked staying home with my baby, and I hated myself for disliking it. The other moms I met apparently had more tolerance for the discomfort and boredom of having an infant than I did. Some of them even seemed to be enjoying themselves. I found myself wishing I had a mother of my own to prepare me for what to expect or to validate my feelings. Maybe, I thought when I felt most sorry for myself, women who had themselves been mothered possessed some emotional reserve that I lacked. Maybe on some unconscious level they remembered being cared for, and that made it easier to accept the selflessness required of a new mother. Whatever the reason, I took little pleasure in pushing the stroller around our neighborhood, the endless rounds of feeding and diapering, and long afternoons trying to keep baby Noah entertained. Suddenly Jon and I found ourselves living out the most clichéd battles of modern parenthood. I was desperate to get back to work, and I resented him for leaving me at home with the baby. All he wanted was time at home with the baby. He was irritated by my complaints. I was the one who had the flexible job as a tenured professor, with the generous parental leave that allowed me to take off an entire semester at full pay. The problem was that I didn't earn nearly enough to cover our expenses, meaning that we relied on Jon's salary to pay the bills. We were snappish and impatient with each other, and our arguments sounded tired, like the echoes of arguments taking place in hundreds of thousands of other households everywhere around us.
Despite all of this, we were completely besotted with our new baby. Whatever hardship parenting had brought to our lives was more than outweighed by the joy we found in Noah, who, we decided, was the most beautiful, charming, and perfect human ever to be born. We recorded his every experience with snapshots, home videos, and copious notes for his baby book. I saved everything: the tiny plastic ankle bracelet he wore in the hospital, his first nail clippings, the first hairs cut from his head, first shoes, socks, sweater, finger-, hand-, and footprints. We obsessed and hovered, afraid we might miss something. We competed for his attention, each wanting to be the one who made him laugh loudest or the one he reached for when he was upset. At night we compared notes, rehearsing all of the miraculous things Noah had done during the day. Before long, we started to wonder what Noah's future brother or sister might be like. We loved him so much, it seemed unthinkable that we would never know this hypothetical sibling who, we imagined, would be just as marvelous and as perfect as his big brother.
JON HEARD WHAT THE DOCTOR had said about Henry, and he wasn't crying. He gazed at our new son with the same look of wonder and curiosity that I remembered from his first pictures with Noah. He held Henry just as gently. The finger that caressed Henry's cheek was no less loving than it had been for our first baby. I looked at Jon looking at Henry and tried to draw from his strength. It helped that, regardless of what my mind was thinking, the hormones kept my body in a state of euphoric relaxation.
My hormonal calm had vanished by the time I was settled in a grim little room in the maternity ward. Jon had gone home to take care of Noah, who, at twenty-two months, was little more than a baby himself. In the rooms around me other families were getting to know their new babies. Fathers walked the halls talking on cell phones. Visitors strolled by my open door carrying balloons and flowers. Nurses and orderlies bustled. It was Christmas Eve. The napkin that came with my gray meatloaf had a wreath on it.
Jon came back with Noah in tow. They'd had a terrible time getting to the hospital and it was late. The subway broke down and everyone had to get off. So Jon lugged Noah and his stroller onto a crowded bus that took them the rest of the way.
Noah expressed brief interest in my pajamas, which were pink with donuts on them, and in the wheelchair I was supposed to use for getting around. Then he got impatient and it was time for them to leave. I felt a spasm of panic.
Jon handed me a white paper bag. "I brought you cake." His face fell. "Almost everything is closed. It's the only cake I could find. It's Christmas, and I don't want to leave you alone."
"It's okay," I lied. "You go home and take care of Noah. I'll be fine. I have to stay here with our baby."
After they left, I couldn't stop crying. I'd like to say I cried because I was worried about the baby upstairs in the NICU. But I didn't feel much of anything for him. I was mourning the loss of the son I thought I was going to have and the family I imagined we would be.
My Favorite Freak
* * *
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 Tod Browning's classic film Freaks again and again. I was especially drawn to pictures of anonymous and long-forgotten people, a woman with three breasts, another with horns, a boy with the lower body of a half-formed twin brother emerging from his abdomen. I visited Coney Island and hipster freak shows in Williamsburg and on the Bowery. I spent one memorable Halloween at an art school in Baltimore, where I shared a panel on freaks with an aged showman and the surviving cast of the early John Waters films. I lay awake at night thinking about sideshows, only to fall asleep and find freaks peering at me solemnly in my dreams.
More than one person had written a history of the freak show. There were plenty of biographies of famous impresarios like P. T. Barnum and the Ringling Brothers. But I wanted to know about the freaks themselves, what they felt when people stared at them and what their lives were like when they weren't performing. I wrote and rewrote, trying to get their stories right. Eventually, miraculously and unexpectedly, the book about freaks got me tenure at Columbia University.
Although I hardly thought about having a baby until some years after the book was published, I was always interested in stories of pregnancy and monstrous births. Maybe it took me so long to want a child of my own because I knew just how seriously things could go wrong. Until well into the nineteenth century, it was widely believed that a pregnant woman had the power to imprint her experiences on the developing fetus. A mother-to-be longs for strawberries in December, and in June her baby is born with a strawberry-shaped birthmark. Sometimes, the powers of the maternal imagination were far more destructive. A woman named Ann E. Leak Thompson, born with no arms, traced her condition to the dark evening when her pregnant mother was surprised to see her abusive husband stumbling home drunk with a coat slung around his shoulders. It was said that Lionel the Lion-Faced Boy was covered in hair because his pregnant mother witnessed his father being mauled to death by a lion. Joseph Merrick, the Elephant Man, claimed that his mother was attacked by a circus elephant, leaving marks of the trauma on the surfaces of his body. I knew these stories weren't true, and I imagined the terrible burden carried by mothers who believed they were responsible for their children's suffering. But I was also intrigued by the idea of a maternal imagination so potent that it could influence the shape of a new life.
People were always asking what compelled me to write about freaks. I knew they thought my odd academic interests must be driven by some equally odd quirk in my past. They were hoping for a good story, and invariably I was a disappointment. I never knew how to answer them because I wasn't quite sure myself. It might have been the year my best friend Naomi and I found a copy of Leslie Fiedler's Freaks: Myths and Images of the Secret Self in our vacation house. We weren't very interested in the words, but we spent hours poring over the pictures of the hermaphrodite with breasts and a penis, fat men and ladies, two-headed babies, and the Elephant Man.
Or maybe it was the summer I discovered, to my horror, that I was growing a mustache and coarse hairs began to sprout from my chin. For years I did everything I could to get rid of them: plucking and tweezing, furtively shaving with my father's razor, burning my skin with waxes and depilatories. I finally met a mother-and-daughter team of electrologists and, after months of costly and painful treatments, the hair was gone. But no matter how smooth my face, I couldn't shake a lingering sense that somewhere inside of me lurked a bearded lady.
Or maybe I just identified with the freak's perpetual status as an outsider.
I don't actually believe any of this. What I really think is much crazier. It requires a willing suspension of traditional ideas about cause and effect. But humor me: I think I wrote that book to prepare me to be Henry's mother.
The Phantom Nephew
* * *
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 my obsession with deviance onto my son, whose difference was replicated in each of the millions of cells that made up his tiny body?
Excerpted from Raising Henry by RACHEL ADAMS. Copyright © 2013 Rachel Adams. Excerpted by permission of Yale UNIVERSITY PRESS.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
Excerpts are provided by Dial-A-Book Inc. solely for the personal use of visitors to this web site.
Table of Contents
My Favorite Freak 13
The Phantom Nephew 17
Learning Curve 23
The Feeding Tube 41
The Nursing Circle 51
What Peggy Did 57
Aiming High Enough 67
Early Intervention 81
Visiting the Front Lines 109
A Simple Place 159
Finding a Voice 169
The Girl Down the Street 185
Surprised by Disability 189
Always Something 227
Selected Bibliography 253
A conversation with Rachel Adams
Q: What motivated you to write Raising Henry?
A: I’m a literary critic by training, and when my son Henry was born, I immediately turned to literature to try to understand my circumstances. I was dismayed by the lack of reliable, informative reading material about raising a child with Down syndrome, as well as the quantity of misinformation I found in mainstream pregnancy guides and child-rearing books. I saw the need for a story told from a mother’s perspective.
Q: Can you tell us some positive things you have discovered or experienced as the mother of a disabled child?
A: The best lesson I’ve learned from Henry is that the world is full of people who have devoted their lives and careers to helping others. I've seen my share of predictable ignorance and prejudice, but I was gratified by the more unexpected discovery of people with a genuine commitment to the rights and well-being of individuals with intellectual disabilities. My list includes doctors and other health care professionals, social workers, teachers, therapists, service coordinators, caregivers, and many, many others who have given their time and energy to helping Henry develop to his full potential and securing the happiness and health of our family.
Q: What changes do you hope to see in the medical establishment and educational system with regard to treatment and services offered for people with disabilities?
A: I would like to see doctors receive better training to help prospective parents make decisions about what it might mean to have a person with a disability in the family. And I look forward to educators learning more about how to enable students with Down syndrome to develop to their full potential.