Poster Child (2 page)

Chapter One

MISS AMERICA

Everyone has predictions about her future when a baby girl is born, and my parents were no different.

A few hours after my birth on July 12, 1974, after I had been cleaned of blood and swaddled in a pink blanket, two nurses brought me in to see Mom and Dad. My mother, a nurse herself, found it odd that two nurses accompanied me instead of one, which was the standard arrangement, but she was preoccupied with my red hair, my hands, my small ears.

"Look at her long fingers," she said. Throughout the arduous seventeen-hour labor and delivery, my father had been present as Mom's Lamaze breathing coach; he was the first to tell her that I had her dad's red hair, a feature she'd hoped I would inherit.

"A pianist," Dad said, lifting my new hand with his own. "An orchestra conductor." As with most newborns, my legs were still tucked up into my chest, having not yet broken entirely free of the fetal position.

On this midsummer morning, warm light spilled into the room of the maternity ward at St. Francis Hospital in Grand Island, Nebraska. I was healthy, and everything looked fine. Before Dad left to pick up my grandmother at the airport and bring her to the hospital to meet me, he called the leader of his congregation's prayer chain to update the parishioners, who had been praying since Mom's water broke: "It's a girl with dainty hands; she has red hair just like Mary wanted. Weighed in at seven pounds even. Her name is Emily."

Later that afternoon while Dad was gone, the doctor returned to Mom's room, carrying me in his arms. The room was hot now; the air conditioner struggled to counteract the humidity and bright sunshine that pressed against the hospital walls.

Dr. Baxter set me on the bed and opened up my blanket. "We have a problem here," he said. He stretched my legs out and away from my chest. I wailed. One leg was visibly shorter than the other.

"What is it?" Mom asked, taking hold of my legs. "One leg is shorter? What does it mean?"

"It's a birth defect," Dr. Baxter said. "I don't know much about it, but I'm doing research." The defect remained unnamed, unnamable.

"But you said she was fine."

"We just noticed it," he said.

"Will she walk?"

"I don't know."

"What does it mean?" Mom asked.

She had been healthy and fit throughout her pregnancy: She gained weight, ate well, and had very little morning sickness; at thirty, she was a normal childbearing age. There had been no warning signs that there might be trouble. Mom and Dad had assumed that I was in the clear. Now, it appeared, I was not. Mom touched my legs and looked at the doctor.

"We'll just have to wait and see," he said.

Mom realized why two nurses had brought me in that first time: They had already known about this mysterious problem. Apparently, it was a situation that required backup. She felt strangely light, released of the heaviness of my body inside her, freed from the burden of physical pain. But now she was filled with the panic of fear, a different lightness.

When Dad returned from his airport run, he had no idea what awaited him. My grandmother had traveled from Illinois to Nebraska assuming that I was normal, healthy, and beautiful. This last bit, especially, was crucial and especially important for a girl. Girls were born to be pretty and desired. She had told everyone about me: "Gorgeous baby girl, the prettiest anyone has ever seen."

When Mom finally told Dad and Grandma the truth about me, that they were still trying to determine what the next few days would bring, not to mention the future, Grandma burst into tears. "It's my fault," she said. Everyone in the small farming community of Flanagan—population 900—knew about her fast boyfriend from the neighboring town of Streator who went to war; about her long, mysterious vacation to Chicago; about her return to town with a baby boy—my father—nine months later.

"Oh God, it's my fault," she repeated. She was hysterical. She took the blame for me, for what I was: deformed. There is that tricky line in Exodus she'd memorized as a child, the verse that promises that the sins of the fathers (and mothers) will be visited upon their sons and, in this case, their daughters. Here I was, a condemnation of her life, when all of her life she had been searching for the status and respectability that being a grandmother might restore. My older brother's birth two years before must have felt like a dream come true, a success. Now here I was, the revisitation of an earlier, irrevocable mistake.
It's my fault.
A statement with a whole lifetime in it: a christening of shame.

As Grandma cried, Dad stayed silent. Mom looked at him. The room was full of unasked and unanswered questions:
Will she live
with us forever? Will she die young? Will she walk, run, skip, play, read, and
write? What will she be? When she speaks, what will she tell us, what will
she say?
And also the other questions that would never be answered:
Why us? Why her?
The air conditioner rattled in the window.

Still waiting for the official diagnosis, Mom was taken to a private room for my first feeding; the nurse thought there might be trouble. Mom couldn't imagine how a short leg would affect my ability to breast-feed, but she was too tired and overwhelmed to argue.

"I don't understand how this could happen to you," the nurse said as Mom opened her gown to feed me. The nurse addressed Dad, who was wearing his white clerical collar tucked inside his black cotton clergy shirt. "You two must live closer to God than anyone else." Blame again: To whom or what does it belong?

The nurse gave Mom a look she would get used to. Later, I would also come to know it well: a look of pity, sadness, with kindness and a bit of unexplainable triumph mixed in. A strangely open yet mysterious look—penetrating and diffuse. "We just don't know what God is going to do," said the nurse, fluffing the pillows as Mom shifted away from her. "We just don't know His plan. Isn't that right, Reverend?"

Dad stared at the nurse, fuming, until she looked away.

"I wanted to smack that nurse for her messed-up theology," Mom once told me. "She might have been trying to be helpful. Anyway, I said nothing. You ate and we did fine."

The next day, a woman my mother had never met before walked into her hospital room and said, "I hear you have a baby with a birth defect."

Mom watched this stranger move crisply about the room, rolling up the window blinds and filling the water glass by the bed. The woman told the story of her son, who was born with a brain disorder; she explained his functional and cognitive problems and her struggles as a parent. Mom realized that news of my deformity had been spread around the maternity ward; she knew this extreme breach of patient confidentiality was unethical and unprofessional. Too angry to speak, she refused to answer the woman's questions or respond to her expressions of concern. She had been
sent in
like a messenger of disaster. "If I'd had the energy," Mom said, "I would have sued that hospital's ass."

I was finally diagnosed with proximal focal femoral deficiency (PFFD), a congenital bone-and-tissue disorder that caused my left femur to develop abnormally in the womb and left it irrevocably damaged. The left leg would always be shorter, deficient. There would be asymmetry in the growth pattern of the limbs; the body would continue to grow unevenly, maintaining its strange, incorrect shape as if it had intended to look that way all along. There might be hip, joint, kidney, and back problems. The problem now had a name: What was the solution?

After Dr. Baxter explained the diagnosis to the best of his ability, Dad leaned against the wall in the hospital room and repeated, "Oh boy, oh boy," until Mom asked him to stop. They were both, unsurprisingly, still in shock. After a long and difficult labor, all had been declared normal, then abnormal. Now there was a name for the problem—the defect—but there were still no answers. The prayer chain at the church was activated again, but for a different reason; Mom's best friend arrived to offer what support she could; my older brother, Andy, was whisked away to a neighbor's house to stay for several days.

I would have needs, different from those of other babies, that my parents might not be able to meet, problems they might not be able to solve, and these would be more serious than colic or refusing a bottle. My needs might carry me into an institution. That word: institution. It is gray and heavy. I was newly diagnosed with a birth defect that seemed to have already set the stage for my life before the curtain had even gone up. The play had just begun, and the audience was already disappointed and stressed, mulling about in their seats, complaining about the actors, the set, the plot.

Over the next few days, more doctors came to visit, together with rotating groups of sleep-deprived medical interns who perked up at the thought of examining a problem-case baby with a congenital defect in the first crucial days after birth. The room was busy and crowded. I think back on that time—of Mom and Dad, me, the doctors and interns, the X-ray machines, Andy in a strange bed at a neighbor's house—as though everything were in a snow globe. Snow falls lightly around the bed, onto the tile floor, onto the fabric of Mom's pastel-colored nightgown; it dampens the bedsheets in irregular patterns that connect and spread. The X-rays gleam in the corner. On the flat surface are the lit shadows of two long leg bones, one not quite long enough, a bit twisted, a bit tentative, searching for its remainder; the left foot points out toward the X-ray's edge as if it is trying to leap away from the body, although at second glance it looks snuggled up close to the chest as if it never wants to leave. One limb looks strong, ready to walk, kick, and fight. The other, smaller one seems brighter, a warning. Turn the globe upside down and the snow keeps falling. The bones glow.

While Dad was preaching at his church that Sunday, Mom padded down the hallway in her pink bathrobe to look at me through the glass windows of the newborns' room. She felt other mothers looking at her, searching her eyes, and she stared back at them. She had longed for a redheaded girl; I had arrived, but in slightly different form from what had been expected or wished for. The nurses had attached a small sign to my crib that read "Miss America" in blue, carefully printed letters. Mom tapped on the glass; she blew me a kiss.

I believe that deep in my memory I hold this image of my mother behind the glass, sending me a kiss and looking at me as if I were the most precious and beautiful baby in the world. Although these circumstances of my birth are factual, it's difficult for me to imagine the scenes: being talked about in the maternity ward; being different, feared but pitied, classified as deformed. But this look, this look of love—this gift—I can easily imagine, because I would know it for the rest of my life.

Mom's eyes found my body in that room of new bodies. She looked into my eyes and told me:
You are perfect, you are enough, you
are beautiful, you are mine.

Instead of predictions about my future, there were decisions to be made, a much darker prospect and not nearly as enthralling. I was a baby that required decisions. I was a baby that people had to come to terms with.

Mom and Dad took me to Dr. O'Hara, who was setting up his first pediatric practice in Grand Island. He said that although he could not test mental capacity or determine intelligence level until I was older, he thought I looked clever. Mom liked him.

Very little about my birth defect appeared in medical journals, and Mom became consumed with making sure that I had the best and latest medical treatment. At the local library, she checked out every book she could find that might help her understand children with special needs; most of these texts were outdated and unhelpful.

More than any other doctor, Mom remembers Dr. O'Hara as "her savior." He answered the lingering questions about her role in my birth defect, offering reassurance that she was not to blame. I was conceived in Carol Stream, Illinois, a suburban area that had expanded into former farmland. When Mom had asked the doctors if there might be fertilizer or other toxic chemicals in the water of the area, they told her it was perfectly safe to drink it. As a nurse, she trusted medical advice and opinions, although another girl in the area had also been born with PFFD. "Nobody brought bottled water in then, and we didn't have filters," she told me. "When I asked the doctors, they always said the water was fine."

"It's not your fault," Dr. O'Hara promised her. "This defect is just one of those things: a fluke of nature, an accident." What about mental complications? At this time, there were still some suspicions that physical disabilities brought with them mental deficiencies as well. "No," he said. "Her eyes look bright. Don't worry." He also treated my frequent ear infections. Each time Mom brought me in, he reassured her that I would be fine, that I was okay.

Dr. O'Hara referred me to Dr. Brown, an orthopedic specialist who recommended the amputation of my left foot. After this procedure and other operations to modify my body, he believed I could be fitted with an artificial limb and have hope for a normal life. Before making a final decision, Mom and Dad collected other opinions from several doctors. Some recommended not amputating the leg, but instead trying the Van Ness procedure, which involves rotating the lower leg and foot 180 degrees so that the ankle joint functions as the knee joint; others suggested waiting until I was older to have the leg amputated. Mom didn't fully understand the first alternative ("How would that look?" she wondered), and she thought postponing amputation was risky because it meant losing a foot after I had already formed clear and precise memories of the body's shape and contours. She thought it best that I grow up with the knowledge of a body that was already altered.