Perfectly Normal

Daryl Sheiner was born with hydrocephalus and needed surgery to stay alive. Today he lives independently. His mother writes with candor about years of denial, anger, resentment and fear, the social injustices she faced, and battles with medical professionals, the educational system, and the array of social service providers who invaded her life..

Summary

Perfectly Normal addresses with unprecedented honesty a mother¹s experience raising a child with a disability—hydrocephalus. This condition causes spinal fluid to accumulate in the head, making it grow, sometimes causing brain damage. A surgical procedure developed only a few years prior to Daryl¹s birth has kept him alive; he is now thirty-six and lives a fully independent life.

The author was nineteen when faced with this difficult life situation. She worked through years of denial, anger, resentment, and fear; she battled with the medical profession, the educational system, and the vast array of social service providers who invaded her life. Her journey radicalized her with regard to the way society treats people with disabilities; by the time Daryl reached adulthood she was involved with and writing about the Disability Rights Movement. She speaks with absolute candor about personal difficulties and social injustice. She tells her story with unflinching self-examination, with no attempts to be "inspirational." She shows what it¹s really like to raise a child with a disability in America, particularly in the uncaring social climate of thirty years ago, some aspects of which persist even today.

Chapter 1 - A Child Is Born
Chapter 2 - Baby Blues
Chapter 3 - The Road Gets Rougher
Chapter 4 - Denial
Chapter 5 - The Girl Who Ate With Her Toes
Chapter 6 - A Homecoming
Chapter 7 - Three Mothers
Chapter 8 - Consequences
Chapter 9 - Becoming Conscious
Chapter 10 - The Biggest Mistake
Chapter 11 - Our Own Private Watergate
Chapter 12 - There Must Be Some Way Out Of Here
Chapter 13 - Someone Else’s Child
Chapter 14 - Do The Right Thing
Chapter 15 - Just The Way You Are
Chapter 16 - New York Mets vs. Yankees

I awoke to find myself in a room with a woman sitting up in the bed next to mine, pulling metal rollers out of her long brown hair.

"Hi," she said cheerily. "My name's Jackie. God, am I glad for some company. Now that I'm leaving tomorrow they finally bring someone in here. Isn't it always the way?"

"I had a boy too," Jackie continued. "They'll be coming around for feeding soon. You'd better let the nurse know you're up if you want to see yours."

Without hesitation I obeyed this stranger who, by virtue of having given birth a day or two before me, qualified as an authority…

My newborn son slept in a tiny glass box perched atop four wheeled legs. At first sight he resembled my grandfather, or any old man, his red face scrunched up in denial of his new surroundings. The nurse gave him to me with a bottle of water. He took a few weak sucks, then fell back asleep. Jackie's baby sucked avidly.

Surreptitiously I unfolded the blanket and took a quick inventory: ten toes, ten fingers, all in the right places. One tiny limp penis. Relieved, I closed my eyes and leaned against the pillow.

Jackie's voice startled me. "Aren't you glad he's all right? I was terrified something would be wrong with my baby. But thank God, he’s perfectly normal."

"Yes," I breathed, recalling the nightmares: attacks on my swollen stomach, hideous creatures clinging to my vaginal walls. Every pregnant woman harbors the fear that something will be wrong with her baby—but to give voice to such thoughts during the nine months of gestation would be to give them greater credence; admitting those fears is as much a part of the afterbirth as the bloody placenta…

The next morning my obstetrician, a young crew-cutted fellow with an upturned nose and pasty skin, came in to check on me. As he poked at my breasts, lumpy with the strain of unreleased milk, he mumbled, "We're a little concerned about the shape of the baby's head. We're going to run some tests to see if he has hydrocephalus."

Life stopped. My heart skipped a beat; my facial muscles froze. The world narrowed, and it would never, never look the same again.

"Oh," he said casually, "it's a disease that causes the head to grow abnormally." He pulled up the sheet and headed for the door; hesitating, he groped for a comforting phrase. "Don't worry," he finally managed, "you can have more kids."

I sat there, totally stunned. So that was why everyone had behaved so oddly the night before: something was wrong with my baby…

I walked to the pay telephone and began dialing Bob's office, but stopped midway, remembering his demeanor the previous night: surely he had known. He had known something was wrong with our baby and he'd deliberately kept it from me. I hung up the receiver and sat in the phone booth absorbing this information.

Never had I felt so betrayed. However well-intentioned were Bob's motives in withholding vital information from me, I would never fully recover from this sense of betrayal; if we'd been strangers when we'd married, we were now well on our way to becoming enemies.

"Linda? I just found out that the baby might have something called hydrocephalus."

"Well, Bob didn't want you to know until you'd had a chance to recover from the birth, so we all had to act like nothing was wrong."

My husband. My sister. My parents. I was surrounded by a band of lying traitors…

The hospital suspended normal visitation rules, allowing Bob to stay with me all day. On and off I cried, on and off I raged. I wanted the baby to live. I wanted the baby to die. I wanted the baby not to have this disease with the evil-sounding name.

When Daryl was brought in for feeding again, I studied him with a more critical eye. I saw what I'd missed before: his head was only slightly larger than normal, but asymmetrical. Tentatively I touched it: it seemed so vulnerable, he was so vulnerable. I felt a fierce desire to protect him, and at the same time, a certain amount of fear--not fear of what might happen to him, but an inexplicable fear of him, of his strangeness…

…Beneath my bravado and drug-induced oblivion, though, I was feeling more and more isolated from the mainstream of humanity, a feeling that would intensify and affect me for the rest of my life…

But deep in the stillness of the hospital night, I took out a pen and paper and wrote a long letter to Angie, who’d been my best and closest friend since we’d met as fourteen-year-old high school sophomores…

…Of course, I was really writing about the pain and injustice inflicted upon me. I told her, letting loose the flood of emotions I hadn’t expressed to anyone else, just how heart-broken I was. When I¹d finished the letter and read it over several times, I firmly sealed the envelope. There. I’d had my say. Would Angie at least hear me? If she, who understood me so well, didn¹t understand me now, then there was no hope that anyone on this earth ever would.

Marcy Sheiner is also the author of Sex For The Clueless, and editor of ten collections of women's fiction. Her journalism, poetry, reviews and fiction have been widely published, and she has written four novels. She managed to raise two children by her wits and not much more, and is now basking in the joys of being Grandma Marcy to Jonah and Lowell. You can find out more about her at http://marcysheiner.tripod.com/

“I worked on this book for over twenty-five years, during which I periodically put it away, sometimes for a few months, sometimes for a few years, because at various points I became hopelessly stuck. I got stuck with rage; I got stuck in terror—but most of all I got stuck in the writer’s hell of self-censorship. I knew if I told the truth about what motherhood has been like for me, I would be breaking an ancient taboo, violating a conspiracy of silence that serves nothing less than keeping the human race going. Further, if I wrote about how difficult motherhood has been for me, I would open myself to the irrational charge, frequently leveled against mothers who complain, grumble, or in any way deviate from the norm, that I don’t sufficiently love my children. If I told the truth about how painful motherhood has been for me, I would be seen as defective, unnatural, inhuman. Worst of all, if my children were to read what I wrote, I would, even at this late date, do them irreparable harm. I would be vulnerable to the most deadly epithet known to a woman: “A Bad Mother.”…

The two most important people in my life are the people who lived and breathed this story: my daughter Stacy, and my son Daryl. They’re the reason that I continue to believe that life, no matter how difficult, is ultimately worth the struggle.”