The Boy in the Moon: A Father's Search for His Disabled Son (17 page)

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 diagnose 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.”

This was a common sentiment among parents of CFC children; what made it more remarkable in Angie Lydicksen was that six months before she expressed that thought to me in May 2007, she had been diagnosed with lung cancer. But her health was less on her mind than her son’s value to the world.

“Oh God, he’s given us so much,” she told me that day, when she already knew she was dying. “He’s taught us how to accept life for what it is, to deal with it as it comes up. You can be either stuck in a bad rut, or you pick up the pieces and go on the best we can. Right then and there [after Luke was born], we just changed our ways. We bought a camper and went camping, because he likes that. One of the biggest things Luke has taught us is to accept being different, not to be afraid of him. It’s just so different from when we were kids. We always stayed away from disabled kids. But nowadays everybody plays with them.” Luke is known as the Mayor at his school. “The whole entire time I thought, if he can do what he did then I can do this.” She meant deal with her own cancer. Luke seemed to put things into perspective. When other mothers complained about a child who hadn’t slept through the night, she tried not to laugh. “Sleeping through the night! Oh my God! I haven’t slept through the night in nine years.”

She wanted to be around forever for him, and when she got sick became afraid that no one would be able to replace her in Luke’s life. But of late she had begun to think otherwise. “In the long run he’s very adaptable.” Her own grave illness only reinforced what Luke’s disability had already revealed. “Without him, I would have been more interested in material things,” Angie said. “Stuff. And now, it’s just like, you know, I can do without it. I don’t need it. Just having your health and people that you love and a family that’s strong …”

Talking to Angie Lydicksen was like talking to any parent who had experienced the ups and downs of raising a child—the steady low-key anxiety punctuated by explosions of fear and concern, the pride and frustration, the exhaustion and pleasure. The difference was that Lydicksen could not afford to succumb to the hyperbolic sense of isolation that can make a father or mother believe he or she is the only one to whom this or that is happening. “I don’t get the complaining thing,” Angie Lydicksen told me that day on the phone.

The following spring, she died of lung cancer. She was forty-two years old. Luke still lives with his father.