by Ian Brown
“I do know they have brought a lot of joy into our lives,” she said. “I do know they’re complete little people inside. I really believe that they’re not a genetic mistake. Maybe they are mistakes in our minds, sometimes, because of the artificial boundaries we human beings create. But I believe that we all have genetic mutations, they’re just not obvious in our clinical presentation. Having the girls has changed the way I live my life. Changed the way I communicate, changed the way I treat people.” She appreciated these changes. “Life doesn’t scare me any more,” she said. “I don’t fear the unknown.” She told me that when she met someone in a wheelchair in a mall now, she wanted to run up and embrace them. “I know I’m in this for the long haul. It really is a value that a lot of people don’t get to appreciate.”
She paused for a moment, and then said she didn’t really know why she still had moments of despair. “My little girls are the greatest example of selflessness and good nature that I know. And yet at the same time I feel a deep sense of loss for them. I can’t separate it from my own sense of loss. That some of their hopes may be crushed. That they won’t experience the same kind of acceptance as I have.”
The light her children threw on her life, and the darkness that hovered around them and their future, went hand in hand, she said; one was not possible without the existence of the other. The most difficult part to accept was not just the hardship her children would face, but that she herself had not realized, until she had a handicapped child, how complex life was, how bleak and at the same time how rich. Kinley’s mere existence (Walker’s as well, I realized) was a form of remonstration, a reminder to look deeper, or at least to be alert.
“I look at the girls, and I think, Who’s to say they’re not happier in their world than I am in mine? And here I am feeling sorry for them because I’m trying to judge them by the standards of the world they aren’t part of.” She’d spent some time crying the night before, talking to her husband about having another child. “I had one of my good cries. I don’t have ’em often, but when I do, look out. There are days when I say absolutely not. Are you out of your mind? When I think about the possibilities of having another special-needs child. But then I think, I’ve been so honoured to have these two daughters, maybe another would be even more remarkable. Maybe I’m being called to a higher calling. And then there are days when I think, my God, it’s like playing roulette.
“Right now, I think Kinley has—oh boy—without trying, taught me how to live with joy, despite tough circumstances. And to use my time wisely. Not to worry about tomorrow too much, but to enjoy today. She’s taught me to laugh at the little things. She’s helped me with my vision of life. Boy, she’s helped me see that each person has something to contribute, and to learn from as many people as we can. No matter their ability, their ethnicity, their religion. She’s taught me to look away from the mirror, to see that life’s more than about me. I think I’ve learned, too, that we’re very inter dependent. I need those girls as much as they need me.”
Diana Zeunen lived in Willmington, North Carolina. Her son Ronnie was thirteen, and one of the more profoundly delayed children in the CFC network: his goal these days was to eat on his own. Ronnie’s life had taken the form of an extraordinary request, but this—to be able to feed himself—seemed such a simple thing to ask. Diana’s husband, an auto mechanic, already had two children of his own when Diana married him; Ronnie was to be the child they shared. “He was the product of a reversed vasectomy,” Diana told me, “so he was really wanted.”
She’d had a typical pregnancy, but when Ronnie was born, his limbs alternated between being tight and still, or like Jell-O. The doctors diagnosed cerebral palsy. Diana never bought it. “Yes, he wasn’t rolling over or making eye contact, like the other kids with cerebral palsy, but he wasn’t the same as them. And of course there was no genetic test.” Meanwhile he had countless medical issues: “Why did he scream? Why did he cry? We went to gastroenterologists, we went to skin doctors.” He beat himself all the time, as if he were autistic. When Ronnie turned four, Diana read a scientific paper with pictures of children who looked just like him: that was how she determined, on her own, that Ronnie had CFC. “We still spoon-feed him,” Diana told me, and I knew what that entailed. “He’ll still hit himself. To me, that’s communicating.” (Ditto.) “People say he’s got a contagious laugh. People say to me, he recognizes you, but I don’t know. It makes me sad to think that he doesn’t.” (Check.) “You always want that ‘Momma’.” (Check.)
Talking to parents of other children with CFC was reassuring—there was someone else out there who knew what it was like—but it was discouraging too, to see your own anxiety transposed, ounce for ounce, into someone else. A net of loneliness and exile had been pulled tight over all of us.
Fergus and Bernice McCann lived in Burnaby, British Columbia, on the fringe of Vancouver, with their daughter Melissa. Melissa was born in 1985, before any scientific papers on the syndrome had been published. In the known CFC community, at the age of twenty-two, she was one of the ancients. She’d spent forty-seven days in a special-care nursery as a newborn before they let her come home: forty-seven days to prove that she could survive before the hospital handed her back to her parents, along with the grinding mystery of how to keep her alive on their own. There was no precedent for Melissa in the highly bureaucratized medical system in her home province, with the result that at first, she didn’t qualify for occupational therapy or physical therapy.
“We saw a lot of that lack of values,” Fergus said, “and a lot of being denied medical care. At that time, CFC was just a description. You know, ‘Oh well, it involves this and that.’” Melissa was an adult, but she functioned at the level of a smart two-or three-year-old; she could fetch a glass of milk from the fridge, she could eat, but she couldn’t dress herself and she nipped at her hands when she was frustrated. She could tell her mother where the portable phone had been abandoned, but she couldn’t possibly survive on her own. Outsiders were often afraid of Melissa: she was almost bald and had hemangiomas—wine-stained vascular skin growths—between her eyes. (Some doctors told her parents to have them removed, while others insisted they be left alone.)
We were speaking on the phone; Bernice was in what sounded like the kitchen with Melissa, on the speakerphone, while Fergus was on an extension in another room. “I think we would be quite critical of the medical care that was available for someone like Melissa,” Bernice said. Her voice sounded heavy, as if it were wearing an overcoat. “Our pediatrician just couldn’t get on board. He didn’t think there was much point. He kept asking the same question: did anything change Melissa’s life in the short term, in the long term? No. But he was certainly curious and interested. Medical people, to us, it seemed that they were satisfying their curiosity.” Melissa was a specimen. But she had a personality, a noticeable presence as well as an astonishing memory: she still used the thirty signs she had been taught as a child. She could make choices, and had clear likes and dislikes, especially in what she wore. “She doesn’t even appear to have looked at something,” her mother said, “but she won’t put it on.” In this she was no different from many other teenage girls.
“Melissa’s incredibly empathetic to people, and to dogs and animals,” Fergus said then, on the extension, and I reeled again, in a way that has become familiar to me: crushing to hear a man speak about his daughter that way, reaching for nice things to say and coming up with her empathy for pets in his hand, like a fish he had to his own astonishment pulled from a fast river. I understood, believe me I understood, but it depressed me anyway. Every conversation I had with other CFC parents was like that.
What drove Fergus especially crazy was that because of Melissa, he wasn’t allowed to have the same impulses and desires the rest of the world had—because to have regular ambitions for your own life meant you were putting yourself first, or even momentarily ahead of your all-consuming child.
“What has the toll been on both of you?” I asked.
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br /> “Go ahead, honey,” Bernice said. This was obviously a well-travelled conversation.
“I guess there’s a toll in terms of career,” Fergus said. “Neither of us could change careers, get more education. I certainly have chased after career advancement. But I couldn’t work a seventy-hour week.”
“And there’s little laughter in this house,” Bernice joined in. “Our boys laugh, but they’re not carefree. They’re twenty and twenty-two. When they were eighteen, they were changing Melissa’s menstrual pads. What eighteen-year-old boy should be doing that?” At least one of her brothers had declared openly that he had no plans to have children: he had already put in his time that way, with his sister.
In the background I heard Melissa moan a little. I wondered if she was embarrassed.
“Yeah, they’re not here,” Bernice said to her daughter, referring to her brothers. “They’re not coming.”
“Our provincial system believes, when you have a disabled child, that your family should step in,” Fergus said then. “They make money hard to get. Parents or children with disabilities are always asking for things, and the government says, ‘Well, we can’t give everything to everybody.’ In my opinion, the whole support system is enmeshed with the welfare system.” Melissa’s disability was caused by a chain of miscommunicating genes. But Fergus believed that people were as suspicious of the cost of caring for the disabled as they were of providing welfare for the unemployed and the indigent. It was as if some people, the government included (in that it made money hard to obtain), believed that Fergus might actually have time or even the desire, in the midst of the hell of looking after a disabled child, to try to use that disability to scam the government and its taxpayers.
The provincial government’s alternative—relying on extended families to care for a disabled child—didn’t work anyway. The McCann clan was an extensive one—forty-four people on Bernice’s side, another eight on Fergus’s. None of them had ever offered to take Melissa for a weekend. Regardless of how one felt about that (and Bernice sounded slightly pissed: “They haven’t stretched themselves in twenty-one years”), it was no basis for public policy. “The government should be giving you what your family needs,” Fergus insisted. “Fair is not equal. Each person has different needs.”
Still, the delicate balance between what you could ask for and what you deserved, and how much you deserved it, was always topmost in the minds of the McCanns. It was only after Fergus and Bernice begged and cajoled for years that the British Columbia government agreed to pay for a pair of day workers to live with the McCanns. They tried that for a while.
But one day Bernice arrived home to find her furniture rearranged. Another afternoon she discovered the fuzz had been shaved off Melissa’s head by the workers in order to make her less noticeable. When Bernice told me these stories, even I wondered if she wasn’t asking too much. She had a severely handicapped child, and the government was willing to pay for an outside helper to live in her house to help take care of that child: it was better than nothing. Perhaps some gratitude was in order. But the more I thought about it, the more flawed that argument seemed. Under what other circumstance would anyone consider it a boon that the government would pay for a bossy stranger to live in your house?
Melissa was an anomaly, and an upsetting one at that, and upsetting anomalies are not what political bureaucracies do best. The disabled are a challenge to everyone’s established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be. The very nature of Melissa’s disability was an incurable problem, a sign of a flaw and a failure: there was no permanent one-size-fits-all solution, no matter how practical and generous the bureaucracy tried to be. Day workers! Funding by square footage per institution! Group homes! All good ideas, and all doomed to fail as well, eventually, for someone. And of course we all wanted solutions, bureaucracies and parents alike: we all wanted to free ourselves from having to face the darker truth that each disability is personal, unique, and possibly unsolvable.
Walker is a fact. He will be the way he is all his life. He is many things to me, not least a reminder of my own fragility and fear. I can afford to admit these failures, in the privacy of my own mind, but no bureaucracy can. And so the bureaucratic solution instead becomes the Grand Solution, applied indiscriminately. This is the unavoidable history of mental retardation and mental illness alike. Fifty years after Philippe Pinel wrote A Treatise on Insanity in 1801, thereby kicking off the era of asylums, one in ten Parisians had spent some time in one. Asylums were the one-size-fits-all solution of their day.
But what Fergus and Bernice McCann missed most of all was not money or help, but privacy. Melissa had thrust them into the public care system, had forced them to fight for everything she needed. Melissa was disabled, but looking after her had disabled Bernice and Fergus in turn. “If you have a disabled child,” Fergus said, “you can’t just watch the world go by, the way you would if you had a typical child. You fight for things, put yourself in these awkward positions, and you lose a lot. We’ve lost the right to just have a family and be left alone.”
Inevitably, Fergus and Bernice worried about what would happen to Melissa when they were gone. They had devised a plan whereby Melissa could live in her own home with three young women to help her. They’d bought her a pretty house, roughly twice the size of their own, which cost $573,000. (“That’s twenty-five years of my go-to-hell money,” Fergus said.) The government had programs that would help pay for Melissa’s companions; the operation of the house would be overseen by a board of directors that included Melissa’s brothers.
When I spoke to Bernice and Fergus, they were “transitioning” Melissa into her new home, into her own life. She seemed to be enjoying the prospect. Their sons were moving out too, and Bernice and Fergus were suddenly looking at an empty house. “This is happening much sooner that we would choose to have any of our children leave home,” Fergus said, “but they decided to do it all at once.” After years of longing to be alone when he couldn’t be, soon he would be. He felt surprisingly desolate.
There was a part of me that wanted to say to Fergus, Well, you got what you asked for. I wouldn’t say that to an average father of normal children who despaired for years of having a moment to himself, and then missed his kids when they began to move away. But Fergus and Bernice McCann decided to make the world take notice of the plight of their daughter. Even I, who knew better, wanted to see them suffer for making me feel their agonies.
There was always another story to top the last one. However difficult someone’s life had been—and I often had to coax people into complaining, so strong was the impulse to appear unaffected—there was always someone else who had it harder.
Angie Lydicksen still lived in the town where she grew up in Connecticut. She was forty-two years old and worked as the manager of a dental office. She had two boys, Eric, who was ten, and Luke, who was eight and had CFC. Before giving birth to her first son, she had been “desperate” to have a family; she had three miscarriages and finally resorted to fertility drugs. But with Luke she became pregnant quickly and just when she wanted. “I wanted to have them close together,” she told me. Her pregnancy with Luke was “more than perfect,” and even when she went into labour two weeks early the doctors considered her full-term. “My problem with pregnancies was always getting to the end of them,” she said, “so when I got to the end with Luke, I never imagined a whole other life would start.” A strange reward for persistence.
Her life changed in an instant. “From the second he came out, all hell broke loose. As soon as he came out, and they placed him in my arms, both my husband and I knew something was wrong. He wasn’t connecting with us.” He was moved quickly to the newborn intensive care unit. Meanwhile his mother began to hemorrhage in her hospital room and passed out. When the nurse found her, she passed out too. All in all, a day of note. Luke stymied his doctors; no one could diag
nose his ailment. Angie carted him to Children’s Hospital Boston and to countless Connecticut health care complexes for three years before someone suggested Costello syndrome. She accepted the diagnosis with reservations—she didn’t think Luke looked entirely like other Costello kids. Then she read an article in Rosie magazine. The article, as it happened, was written by my wife. When Angie read Johanna’s descriptions of Walker, she immediately took Luke and the magazine to her pediatrician and asked it if was possible that Luke had CFC instead. The pediatrician couldn’t have cared less. “He told me to take him home and love him. ‘You got what you got,’ he said. So I got rid of that doctor.”
She embarked on a long and frustrating search for a more precise diagnosis. She tried to see John Opitz, but Opitz was busy and couldn’t see Luke for a year. A year. She eventually met the geneticist in Salt Lake City, but Opitz didn’t think Luke was CFC: the boy’s features were “softer” than those of a typical CFC child (Angie had noticed that herself), and “he didn’t like the fact that Luke had eyebrows”: 95 percent of the children with CFC symptoms who had eyebrows turned out to be Costello kids. To Lydicksen, such judgments seemed like guesses.
She carted her boy to the annual conference of Costello children, but she still didn’t think he fit. On a second visit, in 2005, she met a researcher from the Comprehensive Cancer Lab in San Francisco who was trying to isolate the genes responsible for both CFC and Costello syndromes. Luke took the test for Costello syndrome: he didn’t have it. Lydicksen “was just devastated. We wanted so badly to fit somewhere. Instead, we were thrown back into the unknown again.” A few months later, as part of California geneticist Kate Rauen’s pioneering research, Luke was confirmed as having CFC. But he was much worse off than most of the other CFC kids. He didn’t speak (though “his hearing is very good,” Lydicksen insisted); she wasn’t sure about his vision (he watched preschool shows on TV from inches away); to this day he requires a walker to get around, and prefers crawling; at three, he began to grow suddenly as he went into precocious puberty (a rare but noted feature of CFC; as if the regular features of the syndrome weren’t taxing enough, Luke has had to submit to a pituitary shot every three weeks, to hold his hormones in check until he’s older). Unlike most CFCers, Luke is tall: at nine years old, he’s five foot eleven. His cardiac issues have diminished (like Walker’s), but (like Walker) as he grew older, he began to have seizures. Luke recognized his mother and father, his brothers, his grandmother; he was very affectionate, though (like Walker) that didn’t begin until he was five. Before that (like Walker) he preferred his own company. “I’d say that he’s anywhere from fifteen to eighteen months old,” Angie said. “He’s definitely under two years old. He definitely has no verbal communication. He laughs, he plays—but he doesn’t play with too many toys.” Like Walker, he loved to pull his hat off again and again, to stymie whoever was trying to make him wear it. “I think Luke, for the most part, he’s happy,” Angie said. “When he does cry, he usually cries for a reason. I think his quality of life is good, for the most part—I think he’s happy in his own little world. And for the most part I’m happy that he’s happy. Sometimes it breaks your heart, because he’s stuck in his own little world. But sometimes I wonder if it’s not better there. Sometimes—because he goes to bed with a smile and wakes up with a smile—I like to think that he’s happy all the time. I like to think he is.”