The Boy in the Moon: A Father's Search for His Disabled Son (16 page)

Good luck and I will be thinking of you and your family, Stacey

Regular contributors came and went as the health of their children fluctuated—and it fluctuated with alarming frequency, in everyone’s case. Some letters foamed over with bossiness and displaced panic. There was a generally observed reluctance to complain or despair—the “woe-is-me school,” as hardline CFC moms called habitual complainers, rejecting complaining as futile and self-indulgent. At the same time there was a lot of religion in the mix: a day rarely passed without someone thanking the Lord for the hidden “blessings” of having a CFC “angel,” without someone else insisting that God “gives special children to special parents.”

I understood that impulse: Walker had given my life shape, possibly even meaning. But Walker had also made our lives hell. On the hellish days the mawkish sermonizing about angels and specialness felt like rank self-delusion, the work of anxious cheerleaders desperate to justify themselves to a cynical high school. Disability is no different from politics or even college football: it divides and politicizes people according to their need, simplifying dark and unanswerable experience into a dependable, reassuring stance. But the details of Walker’s life belied any certain path.

Johanna had been in touch with Brenda Conger’s CFC network early on, before the Internet existed. But she was impatient then for specific advice, for skin creams and therapies that would help right away. “It seemed to be a lot about Jesus and angels and thinking of the kids as gifts from God,” she told me years later. It was hard to think of Walker as a gift from God, unless God was a sadist who bore a little boy a grudge. After that Johanna stayed away from the network, and we coped on our own.

Lana Phillips was the mother of Jaime Phillips, one of the first five people identified as having CFC back in 1986. By then Jaime was ten years old. Lana dealt with Jaime’s bent and broken self for nearly twenty-five years before there was an Internet, or any CFC network of any real note—and that was near Wendell, Idaho, which is not exactly the centre of the medical universe.

I met Lana over the telephone: she had a clean, clear voice like something outdoors on a fresh day. Lana was grateful that Jaime was even alive. The doctors realized something was wrong from the moment the child was born, but no one knew what. She wouldn’t eat. A neighbour suggested goat’s milk and yams—both easily digested by finicky children, or so the neighbour said—so Lana bought a goat and milked it and boiled up massive batches of yams. To her surprise, the diet worked, and Jaime grew stronger. Getting Jaime to talk was less successful. Lana and her husband Mike, who owned his own insurance agency, drove to Los Angeles to have Jaime examined at one of UCLA’s medical centres; the doctors there suggested they take her to see Dr. John Opitz, the famous geneticist from Wisconsin. When he examined Jaime a few months later, he told the other doctors present they would likely never see another case like Jaime’s in their lives.

Two years passed before Opitz and his team of colleagues published their groundbreaking scientific paper naming CFC as a new and distinct syndrome. The day Lana read that paper was the first time she had ever seen a picture of another child with CFC. Lana had the idea that the publication of the scientific paper would unleash a flood of undocumented cases of CFC, and that the scientists would put her in touch with other CFC parents, and vice versa. She even gave them written consent to share her name and address. But nothing happened. The geneticists kept the information to themselves—for reasons of patient confidentiality. When you have a child with something as rare and unknown as CFC, the
last
thing you want is confidentiality. You want all the help you can get. But this is a measure of how segregated life with a rare syndrome can make you.

For four years, Lana heard nothing. It was as if the syndrome had been named and then dropped down a mine shaft. So she did the only thing she could do: she spent hours rereading the published report and inspecting the same pictures over and over again. Her own daughter seemed to have the severest symptoms, and Lana worried that she hadn’t heard from anyone because no one wanted to meet Jaime.

By the time Jaime turned fourteen, Lana had gone to work for Head Start, a national education program for children from unstable and underprivileged backgrounds. She worked out of the local public school. One day word came down from the office that a new child would be joining her class. The new kid hadn’t started walking until she was four—just like Jaime.

A couple of days later, Lana met the new girl. “When that child walked into our classroom I could not believe my eyes,” Lana told me. “I immediately thought to myself, if I were a geneticist, I would say that this child has Jaime’s syndrome, this child has CFC.” As soon as she could, Lana contacted the girl’s mother, and sure enough, she too had been diagnosed with CFC—by the same pediatrician who had diagnosed Jaime. He just hadn’t thought to pass the information along to Lana. Instead, in a fluke of unimaginable proportions (there is no statistically significant geographic pattern to the occurrence of CFC), in as close to a geographically remote place as you can get in the United States, a CFC child walked into the classroom of a woman who had the only other CFC child for thousands of miles. Lana figured that had to be something like a miracle, statistical or otherwise.

For Lana the encounter was a huge relief. “There is something powerful and satisfying about knowing why your child is the way they are and being connected with other families who have a child like yours,” Lana explained. Still, the new child was much more developmentally advanced than Jaime, and Lana was afraid her mother would be upset meeting Jaime, a much older and more severely challenged person, a portent of the future.

As it turned out, the other CFC mother never expressed any desire to stay in touch, and the family soon moved away. “But I got to work with the child,” Lana told me, “and I thought, this is a real syndrome.”

By the time Jaime was eleven, she was too much for Lana and her husband to look after (especially alongside their three other children), and she went to live in one of the top group homes in the United States, in Idaho. “That was the most dramatic, the most difficult thing I have ever done,” Lana said. “There was this hole in my heart. And I think that was part of the difficulty I had when I thought about reconnecting with the CFC community.” It was a steady reminder that other parents lived with their CFC children, could handle their CFC traits.

Jaime lived in the group home for nineteen years, until she turned thirty. She saw her parents every weekend, though they lived a three-hour drive away. A year before I spoke to Lana, however, Jaime became sick—a complicated mix of septic pneumonia and lymphoedema that left her close to death for four months in an intensive care unit. When she finally recovered, Lana and Mike—by then sixty-one and sixty-two years old respectively—took her out of the group home and brought her back home to live with them, with the help of a pair of full-time caregivers paid for by the state and proceeds from Mike’s insurance business. “In the intensive care ward, it was almost like looking at a stranger, and I guess I didn’t like that feeling,” Lana explained. She wanted to protect her daughter. In the ICU Jaime was fed enough metabolized morphine to put a 225-pound man under for an entire day—except that in Jaime it wore off in two hours, whereupon she’d rip her IV lines out. She was four foot nine and weighed ninety-six pounds. She couldn’t speak and she was only half trained on the toilet, but she had a will of granite.

Jaime’s return after almost two decades in a group home had given Lana a new outlook. “I live my life less from fear now,” she told me. Now that Jaime is home day and night, Mike and Lana have realized that she understands more than they thought she did. She has favourite signs for her favourite words,
shoes
and
more
. No one knows why: those just seem to be the most rewarding concepts in her unusual life, something she puts on every day, something she desires. “She got so many results from that sign,
more
!” Lana said. Jaime—who has the “mentality,” as Lana calls it, of someone eighteen months to two years old—loves men. “At church she’ll see some good-looking young man she likes, or some older man, and she’ll run up to him and grab his arm and giggle.” Jaime was thirty-three years old when her mother told me that story.

But Lana doesn’t mind. “I just feel that I am becoming the person I’ve always wanted to be in life,” she said. “I work with small children, I have learned patience, and empathy, to reach out for people no matter what they look like. And that has all been because of Jaime.” She thought for a bit then, and went on. She’s a devout Mormon, and had been talking about what Mormons call “the eternities,” about heaven and God’s justice. “Someday she’s going to have a perfect body and a perfect mind.”

Who wouldn’t want to believe that? Jaime, a grown woman with an infant’s mind, had changed Lana’s life even as she went on blithely living her own. And that change had started, Lana remembered, the day another child with CFC walked into her classroom. “For me,” she insisted, “that meeting filled a void.”

As a fairly conventional atheist, I wasn’t comfortable with the idea of eternity and words such as
miracle
. But they seemed to perform an important role in the lives of a lot of people who cared for children with disabilities. The possibility that their lives had been touched by God’s grace was at least one way to make sense of the otherwise senseless burden they carried.

nine

I tended to phone parents who had CFC children in the afternoon: I needed to work up to it as the day wore on, to shore up my courage. I was afraid of what I would learn—that this child was luckier than Walker; that these parents had been more dedicated. And yet that never happened. No one was luckier. If someone had an advantage in this strange world of the severely disabled, they had lost something somewhere else. Delusions were rare: these parents’ circumstances were stark, but they were clear, and clear had a rare attraction.

So I phoned them, or sometimes travelled to meet them, and they would tell me the story of their lives. They told me the most remarkable things.

Shelly Greenhaw lived in Oklahoma City, and had one of those great wide-open Oklahoma accents. She was the mother of a five-year-old girl with CFC, Kinley, and a four-year-old, Kamden, who had what looked to Shelly to be an autism spectrum disorder. The thought of having two disabled children staggered me, but Shelly was a surprising person in a lot of ways. She’d played varsity softball in college (“I started out in left field, but by junior year I was a catcher”), and had also been Miss Congeniality in the 1995 Miss Teen America pageant, which she’d entered as a lark. After college she went to work for a pharmaceutical supply company, for whom she was still working as a salesperson. She wasn’t the sort of person I expected to find as the mother of a disabled child.

“How do you do it?” I asked. “With two girls like this?” “I guess sometimes I don’t feel like I have a choice.” She’d seen kids in worse shape, too, and felt she was lucky that she had “a walker and a talker.” She was a Christian and that helped, she said. Then she admitted she had her dark days too; that they were inseparable from the good ones.

“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.

“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.