Out of Grief, a Child of Joy

Ten-year-old Tracy Taylor lays down her crutches and with a little help from her brother Robby climbs atop a skateboard, folding her toothpick-thin legs under her tiny 35-pound frame. With a little push, she is off—speeding down the street, squealing with delight. Again and again she rides this asphalt roller coaster, her face illuminated by a 100-watt grin. And then, as she zooms down again, the board gets away from her, and she tumbles into the street. “Ouch!” she cries, holding up a scraped finger for inspection by her mother, Anne, 40, a diabetic who is standing on the sidewalk, leaning on her own crutches. Tracy collects a kiss from her mother and a Band-Aid from her brother, and then she is off again, the fall forgotten, wrestling with her golden retriever, Kelly.

Ten years ago, when Tracy was born premature, deformed and battered by a cruel array of diseases, doctors predicted that she would never live to see her 5th birthday. If Tracy had merely survived her years of pain, recurrent surgery and frustrating setbacks, her story would be extraordinary enough. But there’s a twist—a dark side to her victory over suffering that must be familiar to many more families in similar distress than will ever be known. At the depths of his child’s pain, his family buffeted by incalculable physical, emotional and financial strains, Tracy’s father, college counselor Bob Taylor, 40, once considered the offer of a mercy killing to end her misery. Could the parents of any severely handicapped child not be brushed by such thoughts?

Tracy and her family not only survived, but thrived. Now she plays, swims, rides horses and makes public speeches as a California March of Dimes poster child. And she does it all with a smile that belies any experience of pain and despair. “Many times I’ve been unhappy and frustrated,” Tracy says. “Sometimes, I just go, ‘Why me?’ I think God knew that if He gave it to somebody else who didn’t have as much—what do you call it?—courage and a positive attitude, they wouldn’t have been able to make it. So He gave it to me, thinking maybe I could handle it. Maybe God sent me down here to do a job, to make other people understand that handicapped people are just the same. The message He wants me to give is, ‘Don’t just sit there when you can fly. If you try, you can do anything.’ If somebody says, ‘I can’t get up,’ my message to them is just try and try and you can overcome that.” Her story is not unique, but her family’s telling of their anguish may be.

When Tracy Taylor was conceived, her mother had already suffered through seven miscarriages. (Her brothers, Robby, 15, and David, 13, were adopted.) By then Anne Taylor had learned to notice even the faintest signs of life in her womb. “I got to the point where I could feel a very slight movement while I was carrying Tracy,” she says. “She didn’t move much, but I’d lie in bed at night with my hand on my stomach and just wait to feel a little movement.” On one such night Anne—a Presbyterian who does not regard herself as a particularly religious person—received what she took as an omen. “It was early morning, like 2 a.m., and it was dead still outside. I felt her moving, and I prayed in my own little way that she be healthy. And right out of the still darkness came two little birds singing their own song, and immediately all my fears were dispersed. To me, that was God’s way of telling me that everything was going to be fine. From then on, I didn’t worry.”

Despite the omen, everything was not fine. On Dec. 31, 1974, Tracy was born three months prematurely and weighed only two pounds. Her doctors had to estimate her length at 12 inches because her crippled body was literally folded in half. Due to a spinal deformity called sacral agenesis, she was nearly paralyzed from the waist down. Beyond that, the bones of her legs were deformed and her feet were in the equinus position, turned in and down instead of perpendicular to the legs. Tracy also had heart and lung diseases, an abnormal kidney and an undeveloped optic nerve that left her blind in one eye. She was in such bad condition that her father, a nonpracticing Catholic, arranged for her to be given last rites. Doctors said that she would be retarded and in constant agony. Hearing that, Anne began to wonder about the birds that had serenaded her that night. “I thought, ‘How stupid I was to think there was any message at all.’ ”

Tracy’s myriad ailments were not the Taylor family’s only problem. Anne was also in dire health. Her severe diabetes, which had already caused blindness in her left eye, had begun to threaten her kidneys and her legs. Recognizing the difficulty for a mother so sick to provide the constant care that Tracy required, Anne’s doctors suggested that the baby be institutionalized. Anne refused. “I couldn’t accept it,” she says.

So after seven weeks in intensive care, Tracy came home to the Taylors’ Glendale, Calif. home. As the doctors had predicted, her life was a series of traumas. In her first year Tracy fell off a bed and broke her leg. Several months later she broke her leg again, falling from a changing table. Although her heart and lung ailments cleared up, her kidneys were chronically infected, necessitating a catheter and four operations.

But Tracy’s frail body housed a will of iron and a tenacious drive to live and to move. At the age of 1, she rolled over, which surprised her doctors. Before 2, she sat up, a feat the doctors said she would never accomplish. Then, shortly before her 3rd birthday, she began to walk independently on crutches.

And she didn’t stop there. Tracy had become particularly close to her step-grandfather, Happle Cartwright, an ex-rodeo rider who always encouraged her to walk. He promised her a ride on a fine white pony someday, when she could manage it. But before Hap could make good on his promise, he died at 72, when Tracy was 7. The child grieved enormously. Then, the next Christmas, she came downstairs and spotted, hanging on the tree, a little wooden horse. “Oh, Happle,” Tracy cried. Without thinking, she took her first two steps without her crutches to reach it.

The year before, Tracy, who had already attended an orthopedic preschool, began kindergarten class in a local public school. “I sat her down,” says Anne, “and told her what to expect—that most of the children had never had any experience with handicapped people, and that some would make remarks and others would avoid her.” Returning home from school one day a couple of weeks later, Tracy brought a lesson for her mother. “You know, everybody has some kind of handicap,” she said matter-of-factly. “There were a lot of kids who were scared to go to school, and that’s a handicap. And there’s one little girl who wears glasses, and that’s a handicap. And there’s one boy who’s afraid of bees, and that’s a handicap in a way.”

Despite Tracy’s tenacity, her battle was far from won. In the summer of 1981 she traveled to the Mayo Clinic for the second time to undergo another urinary tract operation. Two years later an operation to correct her painful foot deformity was unsuccessful. Meanwhile, her mother’s condition was worsening. In 1981 Anne had an operation to repair the tendons in her wrists, which were painfully swollen as a result of her diabetes. She was also undergoing emergency laser surgery on her one good eye. Shortly before, her diabetes-ravaged kidneys had failed—requiring dialysis for up to five hours every other day. “The idea of being hooked up to a machine,” she says, “was almost more than I could bear.” The diabetes had also crippled her legs. “I had to crawl on my knees to make a bed,” she says. “I couldn’t go up a threshold more than an inch without a crutch or a cane.” With the medical problems came financial worries. Even after health insurance coverage, the bills (totaling some $250,000 to date) have been at least $10,000 a year, more than Bob’s $38,000 salary could cover.

The emotional price was higher. “Things kind of boxcarred with us. Nothing seemed to clear up before something new started,” says Bob. “I was really up against the wall.” Then, he says, he received a cryptic telephone call in the summer of 1983. “I have been told that your family is a good family and that you are dealing with things that are above and beyond that which you can deal with,” said the anonymous male voice. “Maybe we can help.” Bob says he thought the caller was going to assist with the family’s medical bills, but he never made any such offer. Instead, he continued to speak of other solutions. “There are ways that these things can be taken care of to help the family…. We know your daughter is in a lot of pain and trouble. There are ways where children like this can find happiness, and the family can find happiness….”

Confused at first, Bob later learned that the caller was offering to help the family by killing Tracy. Even more shocking was his realization that he was considering the idea. “I didn’t tell him yes or no or maybe, I told him I would think about it,” Bob recalls. “My first reaction was, ‘What am I going to do? Is this a possibility?’ I was looking at my options, which sounds cold, but that is what it was. If I looked at it percentage-wise, probably 20 to 30 percent said, ‘This is a way out.’ I thought, if you have a bad finger, it hurts to remove the finger but the rest of the body is all right.”

Coldly, analytically, Bob weighed the anonymous offer until the horror of it hit him. “What am I doing? What am I thinking of? I can’t do this.” About 10 days later the man called again and asked Bob if he had considered the offer. “I told him that we would have to work it out some other way,” Bob says.

Bob’s rejection of the mercy killing did not solve any of the family’s problems, but somehow it seemed to help. “It made me realize that I had another foot and a half to go before I went under the water,” he says. “It showed me that I had enough reserves to find answers other than this.”

In the 18 months since those calls, Tracy has also improved physically. A second operation on her feet—performed last February—was successful, and now she can get around without constant pain. That operation liberated Tracy, enabling her to attend a YMCA summer camp comfortably and to begin a program called “Ahead with Horses,” in which handicapped kids and adults participate in a therapeutic horseback program. Although she still suffers from many problems—she can neither control her bladder nor bend her knees or ankles—Tracy is doing well in fourth grade, walking around the classroom without crutches and generally keeping up with her classmates, who stand head and shoulders over her. “She doesn’t want any special treatment, and she doesn’t get any,” says Bridget Mahoney, her teacher. “Like other kids, her favorite subject is recess.”

These days Tracy’s doctors are issuing optimistic predictions about her future. “Given the fact that she will always be small and have some vision difficulty, I think she can have a very good life,” says Dr. Robert demons of the Children’s Medical Group in Glendale. “She can certainly attend college and certainly have a career.” Tracy agrees. She just can’t decide which career. She wants to be a horseback gymnast or maybe a teacher or a swimming instructor or a scientist—one who “finds cures for stuff like diabetes.” She may first become an actress; a producer has optioned the movie rights to her story and may star Tracy.

Whether or not she ever attains any of those goals, Tracy has already fulfilled the promise of those birds who sang out of that dark, still night to her pregnant mother. “For quite some time,” Anne says, “I thought I was really dumb to think that was a message. Then things started happening and it didn’t take too long for me to realize that it was a message. It was God’s way of saying that everything is going to be all right. Tracy has touched more people than she will ever know. I genuinely believe that she is a messenger. She was sent here for a purpose, even if only just to touch me. She has given me a faith in God that I never had before.”

Tracy is less mystical, more matter-of-fact, about the meaning of her heroic struggle. “I just told myself, ‘I’m going to do this, no matter what,’ ” she says. “I just set my mind to it. I don’t sit down and say, ‘I can’t do this.’ There’s always a new goal for me. My next goal is to get rid of these crutches permanently.”

But Tracy doesn’t talk for very long. Like most kids, she is too full of pep to sit and philosophize. She’d much rather move. “Let me show you my forward roll,” she says, with that glorious smile. And suddenly she is somersaulting across the living room.