The Boy In The Moon Part 4

At our lowest point, we would try anything to feel better. I remember coming home one day to find my wife drinking wine and telling an elaborate story to Tecca and Cathrin, the friends who had been with Walker every stumbling step.

"I was at my chiropractor, Anita's," Johanna was saying, "and at the end of the session, she said, 'I have an idea about Walker. This is pretty woo-woo'-that was Anita's phrase, woo-woo woo-woo-'but I wonder if you would take him to a shaman. A native shaman.' And I was so strung out on Walker that I said, 'Sure.' So two weeks later we set out to see the shaman."

"What, all three of you?" Cathrin said.

"Yes. We went to a native healing centre in an incredibly nondescript building. It looked like a rec room-industrial carpet, fake pine panelling. I was worried Walker might wreck the shaman's karma by freaking out. But as the shaman walked in, he became completely calm. So that was weird. He seemed to find some peace.

"There was a blanket in the middle of this bas.e.m.e.nt floor. A woman, the shaman, was sitting on the blanket. There was an interpreter, a guy who explained what the shaman meant. You had to give her some money and some tobacco as an offering. So I gave her fifty bucks and put a pack of cigarettes on the blanket."

"What was Walker doing?"

"Walker scooted about between the shaman, me, Anita and the interpreter. I was nervous, but they didn't care, so I began not to care.

"The shaman lit a pipe. She lit some sage gra.s.s. She began a long introductory incantation. She spoke Walker's whole name: Walker Henry Schneller Brown Walker Henry Schneller Brown. She called to the east wind, and then all the other winds, and then for Walker. By now there was a lot of smoke in the room, and I had a cras.h.i.+ng headache. Then the shaman said: 'The gate appears.' And the guy, the interpreter said, 'Okay, it's starting.'

"The shaman said, 'I see a tree.' It was old and new. Parts of it were dead, and parts were alive. There was a light on the tree. It was full of singing birds. On the other side of the gate was a well, or pit. The shaman was singing all this, and the interpreter was interpreting. I'm condensing it. 'I see a well so deep you can barely see the water,' she said. And she said, 'I see a lot of elders.'"

I was still in the hall, jacket on, listening.

"The elders had come to see Walker, the shaman said. There were more than the usual number. Maybe they knew him? Maybe Walker was one of them. Maybe Walker was an elder. She couldn't tell. But they seemed to know him, anyway."

"The shaman said Walker was an elder?" This was Tecca.

"She wasn't sure. After the ceremony, the interpreter said the tree was Walker's life and the singing birds in it were all of us. The well was Walker's quest. And Walker's quest, the purpose of his life, was to see if he could see his reflection in the water at the bottom of the well."

"Get out." This was me.

"That's what she said. 'This is the path that he has chosen for himself, to see if he can see his reflection. He may or he may not, but this is his quest.' Then the interpreter asked if I had any specific questions for the shaman. I said yes. What about this new group home, is this good for him? Should I let him go there?"

"And the shaman said, 'It will change his path. But his path is his path. He has to go down his own path.' Then I asked why he was injurious to himself, why he hit himself. And the shaman said he was trying to find the shape of his reflection in the well."

I wanted to lie down on the hallway floor.

"It was a huge relief to me," Johanna said. "Because for the first time, the only time, someone wasn't trying to fix him. They were just describing him. There was no judgment or fear. It was just very accepting. And I do think it was a turning point for me. Instead of trying to fix Walker or make him better or diagnose him or see what was causing his state, it was just what and who he is. This is what he's doing. It wasn't a triumph or a tragedy. It just was."

Silence. "Well," said Cathrin, "if I'd known he was an elder, I might not have let him look down my blouse all the times he climbed up into my lap. Turns out he's a dirty old man."

Tecca paused for a beat. "Dirty old shaman shaman."

eight.

The summer Walker turned eleven, living in his group home, I decided to get in my car and start driving. I felt compelled-though lured would be more accurate, strange as it might sound-to find some of the other people in the world like him. There were only a hundred of them, and they were scattered all over the world: Australia, Denmark, Britain, j.a.pan, the United States. The nearest Canadian case I knew about was a thousand miles away in Saskatchewan. Thinking back on it now, it was another way to hold on to my boy, even as we were letting him go.

My first stop was California. That took a couple of weeks. Johanna didn't mind my absences: she never stood in the way when I tried to work my way closer to Walker. That had always been the case, since the early days when he was new and she was afraid, and I carried him through the dark places for her, until she was ready to love him. That earned me s.p.a.ce. Or maybe, as she said one evening, "I think of Walker as Walker. And if I see other kids like him, then I'll start thinking of him as a kid with a syndrome." She preferred him as the only one of his kind. I wanted him to be like the world-or, though I didn't know it then, vice versa.

Emily Santa Cruz is hard to forget. She was the first person with CFC, other than Walker, I ever saw.

She was nine years old and in her mother Molly's arms, on the porch of their blue-and-white house in Arroyo Grande, halfway down the coast of California. Arroyo Grande is where the industrial farms of the dry-roasted Salinas Valley slip down to the cooler coast and the Pacific Ocean. Arriving there was like dropping into a new, more sympathetic atmosphere.

Emily had curly, black, standard-issue CFC hair, like Walker; slanty CFC eyes, like Walker; k.n.o.bby CFC fingers; thick, brown CFC skin. I couldn't stop staring. Like Walker, she was spindly, and couldn't speak, but she could focus more than he could, and she wasn't as shy. It was a relief to find someone like my son, but a shock to see how stark the syndrome really is: I had no emotional attachment to Emily as yet, no need to find an "inner girl" or see her as anything more than she was, and so I saw only what was there: a small, bent, unusual, curious, twitching kid, afflicted but also clarified by her affliction. An elemental form of human being. Black-brown eyes; a grin as wide as a fender.

Even their house looked like ours, every surface cleared eighteen inches in, as far as Emily could reach; like Walker, she loved to throw things on the floor. Toys were scattered across the living room, the artifacts of her morning.

After Molly Santa Cruz had invited me in and asked to see some pictures of my son, we talked non-stop for eight hours. Emily was luckier than Walker in some ways-she could eat by herself-and not so lucky in others. A list on the fridge chronicled her seizures. It was pages long, single-s.p.a.ced, and daily.

Sometimes Emily got out of her chair and crouched down on all fours next to us to peer at a toy. Sometimes she scrabbled a patch of wall with her fingers. The same squawks of excitement as Walker, the same chirps of desire.

Everything Molly told me was familiar. Emily liked to sleep without a blanket. For the first three years, she woke up every night, three times a night. "I think neurologically impaired kids like to get up at three or four in the morning," Molly said. Their lives were ruled by medical appointments: occupational and speech therapy twice a week, orthopedics every three to six months, a cardiologist annually, ophthalmologist twice a year, neurologist four times a year.

Molly was forty-five. She had a matter-of-fact way about her, the result of nine years of caring for Emily all day followed by evenings of work at her family's restaurant in nearby Nipomo. Her husband, Ernie, was fifty-six. He was a logistics specialist for a company that made Slime, a tire sealant. Leanne, Emily's older sister, was eighteen.

After we had been talking for an hour, Emily began to warm to me. She put her face two inches from mine and examined my notebook; I drew a picture of her and she looked at the picture and coughed, then laughed at her coughing. I rubbed her back: it was skinny and bony, her spine a thin dorsal ridge, like my son's. Should human beings ever discover benign and co-operative life on other planets, I wouldn't be surprised if they feel the same way I did that breezy California afternoon after meeting Emily, Walker's genetic cousin. I suppose it's simple enough: his universe felt slightly less lonely than it had before. My boy wasn't alone. Emily clapped her hands and climbed up into her chair again and began making a brrrting brrrting sound through her lips, which she found even more hilarious than I did. She was nimbler than Walker, but periodically slipped off into the same private, unreachable places. Molly spoke to her as she would to anyone else. sound through her lips, which she found even more hilarious than I did. She was nimbler than Walker, but periodically slipped off into the same private, unreachable places. Molly spoke to her as she would to anyone else.

"Do you think she understands you?" I asked.

"I don't think she understands a lot," Molly said. "But she's starting to understand. Especially at school, with the routine of every single day."

School was due to start in a week. When Molly mentioned it, a hungry look crept onto her face. Emily at school meant a chance to sleep in.

The strange thing is that when the incessant watchfulness of having a CFC kid does let up, it's hard to let go. Ernie Santa Cruz, Molly's husband, noticed it the first time he and Molly took a weekend away from Emily, when the child was five years old. They left her with Molly's sister, Kate, who lives fifteen minutes away in the Salinas Valley, not far from their parents, who descend from some of the first missionaries who settled California. Ernie had reserved a room in a great motel next to the Avila Hot Springs, and the setting was perfect. Their first weekend away in five years.

And yet what's the only thing Ernie can think about? Emily. Every few minutes, he has the same thought: what's Emily doing now? Is she sweeping the books off the bookshelf in the living room? Or is she alone in her room?

Ernie grew up in Whittier, California, Richard Nixon's hometown, attended state college in Chico for a degree in physical education, served in the navy in j.a.pan and Vietnam. He coached girls' volleyball at the Arroyo Grande high school every afternoon. Leanne, his older daughter, was on the team. They'd won the regional champions.h.i.+p twice, the league champion s.h.i.+p sixteen times. He'd been offered college coaching jobs, but he didn't want to travel far from Emily. He was a very steady guy.

Out in the backyard of their house in Arroyo Grande was an old shed. Next to it was an old chair. Next to the chair was Ernie's shrine. That was one word for it, anyway. ("He says this is his ident.i.ty," Molly had said, as she gave me a tour of their place. She seemed both mystified and rea.s.sured. "He says this is his favourite place to be.") A plastic car, some rubber frogs, d.i.n.ky Toys, a meat grinder filled with cacti, a Corona beer bucket, some Mayan masks, Emily's old sneakers with hearts drawn on the toes. Emily, meanwhile, was walking around the yard and crouching down to the lavender plants and sniffing them and saying, "Buh! Wuh! Wuh!" Ernie liked to sit in the chair when Emily played in the backyard. He could sit there in his shrine and watch Emily be herself.

This was definitely-maybe-his last year coaching volley ball. "I see him getting a little more tired," Molly said. Ernie and Molly had always dismissed the idea of putting Emily into a group home. But that was changing. "We've always said we're gonna keep her with us as long as we can," Molly said.

By the time she got around to talking about such things, we were in her car, heading out to dinner at the restaurant her parents have owned for years. The long automatic irrigators had started up on the big farms next to the highway, as they do every evening, the water spritzing above the fields in the distance like wild thoughts.

"But we've started to think about it. We always said, it'll be easier next year with Emily. But it never is."

The thing about the CFC community, it turned out, was that everyone was isolated, and yet everyone knew everyone else. I met Molly and Ernie and Emily Santa Cruz, for instance, through Brenda Conger. Everyone knew Brenda.

In 1992, at the age of thirty-four, Brenda Conger had a husband, Cliff, a healthy two-year-old daughter named Paige and a job as a special-education teacher in Binghamton, in upstate New York. Then she got pregnant again.

This time, it didn't go well. Cliffie, her son, was born eight weeks early. According to the lumpy technology of the time, he showed no chromosomal abnormalities, but he had bigger problems. For instance, he couldn't breathe. He spent his first sixty-three days of life on a respirator in the intensive-care unit. Brenda says, "It was my worst fear as a special-education teacher, to have a special-needs child." The doctors predicted that the boy wouldn't live, and that even if he did, he would never walk or talk. For Brenda, it was agony. She started to pray, and not for the usual kind of salvation. "Take this child home," she would whisper to herself "And do it quickly."

Days and nights pa.s.sed in a single blur. At last, after more than two months of watching their child breathe via respirator, the Congers and their doctors decided to take Cliffie off life support. "And apparently a guardian angel was at work," Brenda later told the local newspaper, "because on that day he started to breathe on his own. I was so mad at G.o.d on that day. That was not part of the plan. But that day I learned that Cliffie was leading the plan. And he had been since day one."

The Congers crashed into the hour-by-hour life of a family with a disabled child. Suddenly they had no time and less money. "We're middle-cla.s.s. I'm a teacher. And if it doesn't snow, my husband-he owns a ski shop-doesn't have an income." The boy was three before doctors diagnosed him. Not that a diagnosis explained much: Cliffie was only the twenty-second case of CFC Brenda could find in the medical literature.

The syndrome, or at least a wide group of symptoms that seemed to be a.s.sociated with a specific physical appearance like Cliff's, had first been publicly described at a March of Dimes conference in Vancouver in 1979, in a presentation t.i.tled "A New Mental r.e.t.a.r.dation Syndrome with Characteristic Facies, Icthyosis and Abnormal Hair." That the presentation had even been made seemed like a small miracle: the identifying team of clinical geneticists were spread across the United States, and had come together largely by chance. One of the members of the team was John Opitz, a legendary geneticist who had already identified and named half a dozen new syndromes. Opitz claimed to have seen his first case of CFC in the mid-1960s. Even so, it was 1986 before the affliction had a name. Conger found only a dozen scientific papers that mentioned the syndrome: most were just short reports of newly discovered cases. CFC was a mystery, and an arcane one at that.

That didn't stop Conger. A slim woman with reddish-blonde hair and worried eyes, she gives the impression of having two or three lists in her mind at all times-all things she has to get done by sundown. The year Cliffie was diagnosed, her brother, Carl, committed suicide. Her boy's troubles took her mind off the tragedy. "CFC has just been a lucky thing to be involved in," Brenda explained the afternoon I met her, eleven years later. "CFC is my therapy."

Within twenty-four hours of the diagnosis, she noticed an ad in Exceptional Parent Exceptional Parent magazine for something called the CFC Family Network. By 1999, Brenda, being Brenda, was running it. There were still only fifty known cases of CFC, but Brenda sent a newsletter to anyone who wrote in or answered the ads in magazine for something called the CFC Family Network. By 1999, Brenda, being Brenda, was running it. There were still only fifty known cases of CFC, but Brenda sent a newsletter to anyone who wrote in or answered the ads in Exceptional Parent Exceptional Parent.

In 2000, she organized the first-ever gathering of CFC families, held in Salt Lake City to be near John Opitz. Molly Santa Cruz showed up too, Emily in tow. "And it was like, 'Oh my gos.h.!.+ These kids look like mine!'" Molly remembers. "Yeah, it was cool. There's nothing like meeting somebody who's been in the same boat you have."

Molly later became one of Brenda's board members. When they came across a paper by a San Francisco geneticist, Kate Rauen, who was investigating CFC, Molly called her up. With Dr. Rauen's encouragement, Brenda and Molly hired teams of phlebotomists to draw blood at the family conferences, which by then were happening every two years. In 2005, using the DNA they gathered from twenty-three individuals, Rauen eventually would identify the first genes known to be a.s.sociated with CFC. She named Brenda and Molly co-authors of the discovery, only the third time non-scientists have been named as co-discoverers of a gene. (As a result, CFC International will have a stake in any future patents developed from their identification of this gene.) These days Brenda Conger steers the world of CFC from the teeming offices of CFC International-the second-floor landing of her house, tucked in behind the stairs. She also oversees the Internet site on which CFC parents around the world discuss everything from seizure treatments to life expectancy, which even with luck won't reach past middle age.

"And that's comforting to me," Molly told me. "Because I don't want Emily to be getting old and I'm not here."

And Cliffie Conger, who doctors said would die before his first birthday? He's now seventeen. He goes to school, reads, talks and can drive a tractor.

Even the briefest meeting with another CFC child felt like the discovery of a new element. Kolosia Taliauli and her daughter, Vaasi, lived in a tiny apartment in a crime-ridden neighbourhood of Stockton, California. Vaasi was two and a half; she had spent 80 percent of her life in hospital. When Vaasi was born, Kolosia was a single mother with an eight-year-old son. She had to give up her job. California (a progressive state, where disabilities are concerned) now paid her $8.25 an hour to look after her own child. Medicaid covered everything else. Formula was delivered right to her door. "Sometimes, with a child with a lot of medical needs," her state-supplied nurse, Laurie Kent, told me, "it's better to be broke."

The first thing Daniel Hess did when he met me was shout and fling his gla.s.ses into the living room. It was an understandable reaction; I had interrupted breakfast with his grandparents, who were visiting from New York City. This was in Glen Ellyn, a prosperous suburb to the west of Chicago, where Daniel lives with his mother, Amy, his father, Steve, and his two younger sisters, Sarah and Laura.

Daniel was a six-year-old CFC miracle. He could talk. He was in school and could read at grade level, better than most of his cla.s.smates. He could even dress himself-he was wearing a very nice pair of green frog boots when I met him, to favour a sore ankle. Metabolically, Daniel is not so lucky: he suffers from ulcers in his intestines, serious allergies and immune problems, pervasive reflux and seizures.

Amy, who was about to turn forty, was a ball of purpose with blonde hair, and possibly (her mother claimed) the most organized woman in Chicago. She had grown up in Lake Forest, Illinois, and in Houston. Her father was an insurance executive. She had a degree in economics and anthropology from St. Lawrence University. She graduated in 1990, married in 1999, and had plans to work in the advertising business. Her husband, Steve, was the landlord of several buildings he had inherited.

Then in 2001, Daniel was born, four weeks early. He couldn't take Amy's breast, but he was her first child-what did she know? He slept three hours a night, aspirating and refluxing all the time. He was diagnosed with Costello syndrome, a genetic mutation that shares many symptoms and features with CFC-so many, in fact, that the syndromes are still often mistaken for each other, though the effects can be quite different. (Costello syndrome tends to produce softer facial features and less intellectual delay, but it is also a.s.sociated with certain forms of cancer, which CFC is not. Kate Rauen and other scientists have identified genes a.s.sociated with Costello syndrome as well.) She remembered the day he was diagnosed very clearly, partly because the diagnosis of Costello surprised her: to her mind, there were elements of Daniel's presentation that didn't fit the Costello template. Still, a diagnosis was a diagnosis, and she was already planning on researching outcomes that afternoon.

But on the way home from the doctor, as she led Daniel through the street by the hand, Amy ran into a woman she knew, from volunteer work they'd done together. The woman looked at Daniel and went white. "I have a friend who has a son who looks just like yours," she said. Amy faxed Daniel's picture to her friend's friend the moment she got home. The woman telephoned immediately: "Your son has CFC." Instead of researching Costello syndrome, Amy was on the phone to Brenda Conger that afternoon. This is not an unusual story in the world of CFC.

Amy Hess's acquaintance was right: Daniel had CFC, and the misshapen genes to prove it. The correct diagnosis didn't lift Amy's burden, but the knowledge that her son was the product of a spontaneous genetic mutation, virtually at the moment of conception, helped her in other ways. "It cleaned up the guilt of creating a child who suffers. You know, 'What did I do wrong? Was it because I had a manicure while I was pregnant, and the fumes did it? Was it because I was a skydiver and took a few jumps before I knew I was pregnant, and he suffered from a lack of oxygen?' So the diagnosis was peace."

Or at least as close to peace as the parent of a handicapped child can get-because even a firm diagnosis cannot clear away the ancient sense of culpability that has been attributed to these random genetic events for literally thousands of years-the lingering swamp notion that there is always a reason such a disability occurs, that it is a punishment, and thus deserved. European doctors in the 1500s attributed them to poverty (as have conservative politicians in North America in the past decade). Herodotus insisted deformity was caused by marrying insufficiently attractive partners. Martin Luther, who often behaved like an imbecile, believed the r.e.t.a.r.ded and the deformed were siblings of the devil, beings born in the wrong realm, and that they ought to be drowned. Amy Hess was an educated and enlightened product of an age of science and progress, but the old shame worked its curse anyway.

"I've had a very, very blessed life," Amy told me one bright morning in Chicago. "I've had great parents. Great friends. Great jobs. Great schools. And I did think, it was my turn.'"

Amy is a worrier. Fortunately for Daniel, she coped by researching. She quit her job and transformed herself into a full-time medical detective. She enrolled him in an endless schedule of therapies-up to ten a week, from the time he was one month old until he was three, mostly paid for by the state's early-action program for children more than 30 percent delayed. "He needs every break he can get. I didn't want him not to learn at a crucial stage." There were stretches when Daniel was in some form of physiotherapy twenty-four hours a day, whether asleep or in his feeding chair.

A child who is at risk of not being able to speak will often be introduced first to sign language. To learn sign, the child has to be willing to make eye contact so he or she can see the signs being made. Daniel's speech and language therapists signed at him for four months before Daniel looked at them-but they signed away anyway. Amy kept detailed, typed records of every medical appointment her son attended, every medicine he tried. CFC is full of surprises, but Amy's systematic attention is a model of how it and similar syndromes should be approached. As far as providing services is concerned, there is no harm in being over-attentive.

The results are obvious. Daniel can watch TV and laugh; he can be reliably distracted. He has the same k.n.o.bby knees as my boy, but Daniel can climb into the car with his dad and-armed with the uncanny spatial sense that lets him do jigsaw puzzles upside down-say, "We go your way, or Mummy's way?" Steve has lived in Glen Ellyn all his life and always takes the back roads, whereas Amy, a relative newcomer, sticks to the main highways. Daniel noticed. And of course there were Daniel's words. He never talked directly to me-I was an interloper, and he was watching TV-but he chattered away to everyone else. Of all the gifts I wish for my dear son, for him to speak a few words is the first I would want granted. I love Walker's Frankenstein walk, and his pulpy hands, which seem dearer for being the flawed things they are. But to hear him speak his own name? To hear him call Hayley Hayley! loud and clear, as opposed to the Hehhh Hehhh he gets out now and then? To hear him say, he gets out now and then? To hear him say, Ma, I love you Ma, I love you? My heart is banging at the thought. f.u.c.k you, Dada f.u.c.k you, Dada! would be the Gettysburg Address.

And not because of what the words mean. The language of CFC children who can speak often has a faintly plastic or artificial quality, a less than genuine feel: they mean what they say, but one is sometimes left with the impression that they are using someone else's words to say it, that their language is more borrowed than self-generated. But at least it is language, proof of an inner life, evidence that they can sense context, that they have desires. I don't need Walker to say I love you I love you to know he does. But if he spoke a word, it would be proof that he had something to say and that he wanted to say it, that there was a point to his saying it. Desire is intention. Intention is hope. to know he does. But if he spoke a word, it would be proof that he had something to say and that he wanted to say it, that there was a point to his saying it. Desire is intention. Intention is hope.

The autumn that Walker turned eighteen months old, my wife and I sat next to each other at the kitchen table and filled out the MacArthur Communicative Development Inventory. It was eight pages long. According to the inventory, Walker understood 115 words: Are you hungry Are you hungry and and Open your mouth Open your mouth; kiss kiss and and wet wet; yucky yucky and and you you and and breakfast breakfast and and moon moon. Good Good, but not happy happy. Dark Dark, but not broken broken. Even sky sky. It helps to remember, of course, that it was Johanna and I who filled out the form: we saw his brilliance everywhere. But in fact he said nothing. Johanna and Hayley have dreams to this day in which Walker can talk like a trial lawyer. They wake up exalted, filled with excitement. In my mind, we chat nonstop. But in actual life, my son can't speak.

So there were times in the beautifully appointed and deliciously organized Hess house when I couldn't speak either, for envy and sadness. I wanted to get in my car and on a plane and fly straight to Walker. But for better programs, earlier intervention (we started at three months), more money, a more energetic and more dutiful father-so I told myself-but for being born five years too soon, Walker might today be as fortunate as Daniel. What if one of us had chosen not to work at all, had stayed home to be a full-time parent and disability warrior?

Every parent of a compromised child knows this secret envy, mines its thick seam of guilt. It's no more reasonable (or logical) to say that one parent has an obligation to stay home than it would be to insist that Amy Hess had an obligation to go to work. My wife and I did everything every doctor and medical report ever suggested, and then some; we had the ready advice of Toronto's Hospital for Sick Children and Bloorview Kids Rehab, two of the best pediatric inst.i.tutions in the world. We enrolled Walker in early intervention programs when he was three months old, began using sign language at six months. None of it had any effect. Nature-the state in which he had been born-was stronger.

Kate Rauen's identification of the CFC gene means, technically, that a fetus could be tested for CFC in utero and aborted. All this pain could be avoided. (The disease is so rare, however, that routine testing is financially unfeasible.) Amy Hess won't even think about that. "I wouldn't change having Daniel," she insists. But when pressed, she admits she also wouldn't choose to have more children who suffer. She may adopt another special-needs child, "because at least then you don't have that guilt component, of bringing such a child into the world." She still blames herself for her son. She does not blame the world for the way it treats him.

Daniel, though, is freer. He often approaches strangers on the street. "Hi," he says. "Do you like me?"

That's the real question.

Eventually having met Emily Santa Cruz and Daniel Hess and others through Brenda Conger's CFC website, I had the opportunity to meet Brenda Conger herself. When I arrived in Vestal, New York, where Conger and her family live, her son Cliffie was waiting at the door. He looked like a more urbane, less afflicted version of Walker-curly hair and gla.s.ses, but slimmer and taller, CFC's Noel Coward. The family's Labradors, Henry and Jackson, walloped into the door as I knocked.

"Those dogs'll wreck you," Cliffie said, and laughed.

This was my first conversation with someone who had CFC.

Before anything else Cliffie wanted to see photographs of Walker. Then he swayed over to help his mother tenderize the chicken she was cooking for dinner. Mr. Rogers, the host of the famous, glacially paced children's television show, was on the wide-screen TV in the living room. Cliffie was fifteen at the time-a teenager watching Mr. Rogers. There were little signs like that, just hints. Cliffie was good for ten smacks on the chicken, then had to stop, exhausted. That was when I noticed how slim his arms were, how glancing his attention could be.

He gave me a tour of the house; he seemed to prefer the second floor.

"This is Mummy's offish offish," he said of the landing nook where Brenda Conger had changed the CFC landscape.

"This is the new room"-the office his father was adding.

He showed me the bathroom, and the shower, and the shower curtain most of all. "Keep that closed," he said.

We continued down the hall.

"This is my daughter's room," Cliffie said, gesturing.

"Your daughter? You mean your sister."

"Right."

He has trouble with his "r"s, and his language did have that occasional pasted-on quality, as if he were reciting from memory, or from a list of possibilities in his head. Parts of his mind were his own; other pieces seemed as if he'd bought them pre-a.s.sembled off the showroom floor. Neurologists have described the same feature in the normal mind, the clipin societal set piece-but in Cliffie it was slowed down and you could see how it operated.

His bedroom, his private sanctuary, was festooned with graphics of John Deere tractors, his great obsession: neat, useful, powerful. There was a John Deere tractor rug on the floor, tractor wallpaper, tractor curtains, a tractor bedspread. There were JD tractors on the light switch, his Kleenex box, his wastebasket; a JD tractor at the end of the chain on his ceiling fan.

We walked outside. While Brenda finished making dinner and his father, Cliff, talked to me about the wilderness days of CFC, before anyone knew anything, and about how he taught Cliffie to ski by walking the bunny hill in ski boots for two years before Cliffie felt comfortable enough to try it on skis-while we adults were occupied, Cliffie climbed onto his John Deere tractor, a sit-down, yard-work model. He started the motor. Then he drove the tractor out of its shed and around the yard. When he was done, he backed it, and its. .h.i.tch-mounted trailer, into the shed. He did this perfectly.

"I couldn't do that," I said to his father. I suddenly had a mental picture of Walker picking grapes. Maybe Walker could pick grapes! couldn't do that," I said to his father. I suddenly had a mental picture of Walker picking grapes. Maybe Walker could pick grapes!

"He's a better parallel parker that any eighteen-year-old with a licence," Cliff said. It had taken him four years to teach his son to drive the tractor. Cliff started by cutting the gra.s.s with the boy in his arms.

At 10:47 that night, Brenda roused Cliffie from the TV. "Cliffie, time to go to bed."

"Mom," he said. Nothing delayed about that tone. "Why can't I stay up? I'm a teenager."

He had the routines of normal life down. Between what he felt and what he had been told to feel was the real boy, still forming. Was that the gift of the CFC child-to be always forming and never formed?

When I came down for breakfast the next morning, Cliff and Cliffie had been up since 7 a.m., making their Sunday omelettes. Cliffie was wearing his SpongeBob SquarePants pyjamas. He shuffled over. Wan wet light was filtering through the window.

"Mr. Bwown, you want mushwooms in yoh omelette?"

"Ian," I said. "Call me Ian."

"Ian." Perfunctory. Names, irrelevant. The moment was all. "You want mushwooms?"