For seven years, my wife and I talked about whether our handicapped son, Walker, should continue to live at home, whether we could keep going on half sleep and half an attention span. Or, to be more accurate: For seven years, I tentatively raised the subject of Walker moving into a home, but then neither of us could bear to think about it.
All that time, we barely lifted our eyes from Walker, wondering if he would talk, or eat on his own, or speak, or hear or see properly, or stop hitting himself compulsively, or live anything like a normal life. The answer was always no. There wasn't even anyone to compare him to. His illness, cardio-facio-cutaneous syndrome, a random genetic mutation, afflicted about 100 people. But they were scattered at random in Australia, Denmark, Britain, Japan, the United States. The nearest Canadian case was in Alberta. We were in Toronto.
There was comfort in our isolation. We could advance at our own pace, live by our own standards, a rare thing in an extrovert's world. It troubled me that my son couldn't speak, but we understood him anyway. We defined each other. Sometimes it was enough.
And sometimes it wasn't. By the summer of 2005, the need for a new living arrangement for Walker was pressing. He was bigger. Johanna and I were older. His sister, Hayley, was becoming a teenager. The prospect of doing nothing but looking after my broken son all my life was crushing. My unwillingness to be satisfied doing that felt deplorable. There were assisted-living possibilities in the offing - we knew all the stories about parents of severely handicapped children who turned such opportunities down, then waited years for another.
The following spring, a scientist in San Francisco isolated three genes that caused CFC syndrome. That, too, seemed promising. A year later, in the summer of this year, I decided to take a drive across North America, to meet the various faces of CFC, the scientists and the sufferers. Thinking back on it, it was another way to hold on to Walker, even as we were letting him go.
Emily Santa Cruz is hard to forget. She was the first person with CFC, other than Walker, I had ever seen.
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. It was like dropping into a new, more sympathetic atmosphere.
Emily had curly, black, standard-issue CFC hair, like Walker; slanty CFC eyes, like Walker; knobby 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 and 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. Black-brown eyes; a grin as wide as a fender.
Molly invited me in and asked to see some pictures of Walker. Then we talked non-stop for about eight hours. Even their house looked like ours, every surface cleared 18 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.
Emily was luckier than Walker in some ways - she could eat by herself - and not so lucky in others. There was a list on the fridge chronicling her seizures. It was pages long, single-spaced 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, the same peeps 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 3 or 4 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, ophthalmology twice a year, four times to the neurologist.
Molly was 45. 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 56. He was a logistics specialist for a company that made a tire sealant named Slime. When he got home, he played with Molly. "She loves her dad," Molly said. Leanne, Emily's older sister, was 18.
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, like Walker's. She clapped her hands and climbed up into her chair again and began making a brrrt-ing sound between her lips, which she found even more hilarious than I did. She was nimbler than Walker, but 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," she 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.
From a notebook I kept:
25 November 03. A call from Walker's school. "We're at some kind of crisis point," Alanna Grossman, the principal, says. He's gone from biting himself to punching his head, in addition to his regular circus of complaints.
We meet at the school at 9 a.m. Present are Grossman; Walker's two young teachers, Thomas and Dean; a psychologist from the school board - a strict, punctilious woman in a tartan bib dress; two educational assistants; me; and Johanna, still in her pyjamas under her overcoat. An army, to care for a boy.
"He needs stimulation," the psychologist says, by way of explaining why he hits himself. How she knows this I have no idea. "We want his hitting to be more of a choice."
They all meet about Walker once a week. He's endangering himself eight days out of 10. "He can follow routine, but gets upset if it's imposed on him," Dean says. "Sometimes being firm works."
"But at the same time we want him to choose," the psychologist interjects. I want her to choose another profession.
"I refuse to believe this is his personality," Johanna says. "And that's why I'm so frustrated at not being able to create a communication system for him."
Tartan-Bib: "Is he too dependent on holding?"
This is what I think is going on: Walker wants to be reassured that he's a human being. He hates how strange he is. Now the psychologist wants to deny me the only way I can tell him he's not.
In 1992, at 34, 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. Cliffy, her son, was born eight weeks early. He showed no chromosomal abnormalities using the lumpy technology of the time, but he had bigger problems. For instance, he couldn't breathe. He spent his first 63 days of life on a respirator in the intensive-care unit. "It was," Brenda says, "my worst fear as a special-education teacher, to have a special-needs child."
The doctors predicted that the boy would never walk or talk. Brenda began to pray, and not in the usual way. "Take this child home," she whispered. "And do it quickly."
Weeks passed. The Congers and their doctors decided to take Cliffy off life support. "And apparently a guardian angel was at work," Brenda later said, "because on that day he started to breathe on his own. I was so mad at God on that day. That was not part of the plan. But that day I learned that Cliffy was leading the plan. And he has been since Day 1."
The Congers crashed into the hour-by-hour life of a family with a handicapped child. Suddenly they had no time and less money. "We're middle-class. 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 3 before doctors diagnosed him. Not that a diagnosis explained very much: In 1997, Cliffy was the 22nd case Brenda could find in the medical literature.
She threw herself into learning everything she could. She's a slim woman with reddish-blond hair and worried eyes: She gives the impression of having two or three lists in her mind, all things she must get done by sundown. The year Cliffy was diagnosed, her brother, Carl, committed suicide. The boy's troubles took her mind off that. "This has just been a lucky thing to be involved in," Brenda explained the afternoon I met her, 11 years later. "CFC is my therapy."
Within 24 hours of the diagnosis, she noticed an ad in Exceptional Parent magazine for something called the CFC Family Network. By 1999, Brenda, being Brenda, was running it. There were still only 50 known cases of CFC, but Brenda sent each of them a newsletter.
She organized the first-ever gathering of CFC families in 2000, held in Salt Lake City to be near John Opitz, a renowned geneticist. Dr. Opitz had seen what he thought was his first case of CFC in the 1960s. Molly Santa Cruz showed up too, Emily in tow. "And it was like, 'Oh my gosh! These kids look like mine!' " Molly remembers. "Yeah, it was cool. There's nothing like meeting somebody who's been through 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 biennial family conferences; using the DNA they gathered from 23 individuals, the genes responsible for CFC were identified. Kate Rauen named Brenda and Molly co-authors of the discovery, only the third time something like that has ever happened. CFC International will have a stake in any future patents.
Meanwhile, Brenda 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 Cliffy Conger, who doctors said would die before his first birthday? He's 14. He goes to school, reads, talks and can drive a tractor.
1 April 04. We now have an advocate for Walker's cause. Her name's Margie Niedzwiecki. "We'll begin to make initial applications for long-term care," she said the first time we met. I must have looked shocked. "You don't have to make that decision now," she quickly added. "Think about it."
Any such application will take years, in any event. To my surprise, the mere fact that Walker is both mobile and dependent makes him a complex case. There are homes for medically fragile kids, but Walker might zoom around turning off their respirators, just for the fun of pushing the buttons. Then there are places for intellectually compromised kids, but they can't handle Walker's fragility, his small-boyness.
The shortage of places of either kind is epidemic. Every month in Toronto alone, 2,400 disabled people are looking for a place to live among 76 group homes. Some wait eight years. That number seldom changes.
Our best bet, Margie says, is to get help from a group for "children who are unusual and hard to serve" newly formed by a government agency. I'm sickened by the idea of Walker living anywhere else. But we can't keep this up. He can't be alone for even a minute, 24 hours a day. Eventually he'll have to move. Margie says it's a good idea to begin the transition early. At 18, it will be too hard.
"Walker responds to love," Johanna tells Margie. "We want him to go somewhere where they love all of him, not just some of him." But she doesn't mean it. Like me, she doesn't want him to go anywhere at all.
The strange thing was that when the incessant watchfulness of having a CFC kid did let up, you couldn't let it go. Ernie Santa Cruz, Molly's husband, had been trying all weekend. Emily was with Molly's sister, Kate. Molly and Ernie, meanwhile, were in a motel for the first time in five years, in Avila Hot Springs, Calif. The setting was perfect.
And yet what's the only thing Ernie can think about? Emily. Every five 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, Calif., Richard Nixon's home town, attended state college in Chico for a degree in physical education, served in Japan and Vietnam in the navy. He coached girls volleyball at the Arroyo Grande high school every afternoon. His daughter Leanne was on the team. They had won the regional championship twice, the league championship 16 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 the 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 identity," Molly said when anyone asked. She seemed both mystified and reassured. "He says this is his favourite place to be."
A plastic car, some rubber frogs, Dinky 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 saying, "Buh! Wuh! Wuh!" Ernie could sit next to his shrine and watch Emily be herself.
This was definitely - maybe - his last year coaching volleyball. "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 even that was changing. "We've always said we're gonna keep her with us as long as we can," Molly said, looking out the window of the car. The long automatic irrigators started up on the big farms in the 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."
Mid-April 04. Another meeting at Surrey Place, a Toronto institution that specializes in autism, where a behaviour therapist has been working with Walker.
The meetings are always the same: play room, indoor-outdoor carpet, pastel walls, half-a-dozen smart women with clipboards, all between 30 and 50, all dressed in denim shifts or loose-fit stone-washed jeans with elasticized waists - good for working on the floor with children who drool. There's always new lingo to be harvested.
Today's meeting is about Walker's head-bashing.
"So it's intrinsic?"
"He is intrinsically motivated. He's obviously getting something out of it."
"His motor skills aren't fine enough for sign language."
"Pointing may be better for low performers."
For Walker to point, he needs 10 sessions of "pointing instruction." It's a new "implementation," requiring new "intake" and therefore new forms. One of the therapists tells me she spends half her time negotiating the bureaucracy of the rehabilitation world. But without these women to light the tunnels, I'd have succumbed years ago.
The behaviour therapist isn't encouraging. "The way to stop a kid like this from hitting himself," she says, "is with food and toys. But Walker just doesn't care about that stuff."
Back at home, Johanna is shaken. "That's when I thought, boy, they don't know anything. I see now: No one's been helping us, because no one can."
We hadn't joined the CFC network. I wonder about that now. My wife was in contact with Brenda Conger in 2001. In those days, the CFC network's logo was a pair of angels: There was too much talk of God and not enough information about skin medication for Johanna's tastes. But mainly the sheer pace of looking after Walker kept our attention close to home.
On my trip, even the briefest meeting with another CFC child, felt like the discovery of a new planet. Kolosia Taliauli and her daughter, Vaasi, lived in a tiny apartment in a crime-ridden neighbourhood of Stockton, Calif. Vaasi was 2½; she had spent 80 per cent of her life in hospital. Kolosia was a single mother with an eight-year-old son when Vaasi was born. She had to give up her job. California (a pro-disability state) now paid her $8.25 an hour to look after her own child. Medicaid covered everything else. Formula was even 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."
28 April 04. Our advocate, Margie Niedzwiecki, introduces us to Lisa Benrubi and Minda Latowsky, the guts of the new special-needs team. Lisa's the boss. Minda will be our case worker. Until this program came along, a developmentally delayed child had to become a ward of the state - relinquished to the Children's Aid Society - to qualify for a group home. Under the new program, we would still be Walker's parents. We'd make all the decisions, but his care would be spread around. Minda, my new god, refuses to refer to a group home as "Walker's house." She says, "It's your house too."
The real problem is structural. Until recently, no one - certainly no part of the government-funding apparatus - was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until 20 years ago, children this medically complex didn't exist. They didn't survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality.
And Walker is an especially needy example of the new human strain. There are high-quality residential homes, but they typically have only 10 to 12 beds. At $250 a day - 24-hour care, shelter, food, transportation - funding is limited and based on need. The contraptions alone are bank-breakers: Tumbler-form feeder seat, $729; Breeze Lite helmet, $129; veil bed (for safety), $10,000. It took three years to find that money. Meanwhile, I can get a $500,000 mortgage in 20 minutes.
"What I'd really like," Johanna said the other day, "is for them to give us the money, so we could have all the 24-hour care he needs, but at home." I don't agree. I'm not sure a miniature hospital in our house would be an improvement.
It's physically impossible to continue to care properly for Walker at home, but emotionally impossible to have him live anywhere else. Johanna calls this her Walker revelation. "Sometimes it's not a choice between right and wrong. Sometimes it's a choice between bad and slightly less bad. That was a revelation to me - that some things are unfixable." She may be coming around.
Years later, Minda Latowsky told me how it looked to her back then. We were having coffee in the suburbs, on our way back from one of the care-planning meetings we have about Walker.
"Physically," she said, "you could see in your household, you were shadows of yourselves. Here were two people who loved their child, who were trying to function as well as they could, who were working as well, who had another child as well. You think about it in future terms: Should Hayley suffer as well? The emotion was palpable. And the struggle I could see in you and the pain you carried around - the roof was coming in."
She stopped talking. I refilled my coffee. "You weren't people with an imaginary complaint," Minda continued. (I hoped it was true.) "Every family has something. It's just a question of levels, and how much a family can cope with. And how each family responds. And you have to be able to ask for it. Because wanting it and asking for it is a big thing. Because it means you can't do it on your own any more. Who wants to admit you've had a child and can't raise him?"
The first thing Daniel Hess did when he met me was shout and fling his glasses into the living room. It was an understandable reaction; I 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 classmates. 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 was not so lucky: He suffers from ulcers in his intestines, serious allergies and immune problems, pervasive reflux and seizures.
Amy was about to turn 40. She was a ball of purpose with blond hair, and possibly (her mother said) the most organized woman in Chicago. She had grown up in Lake Forest, Ill., and in Houston. Her father was an insurance executive. She had a degree in economics and anthropology from St. Lawrence University. She had graduated in 1990, married in 1999 and had plans to work in the advertising business. She was the definition of high-functioning. Steve was a landlord, with several buildings he had inherited.
Then in 2001, Daniel was born, four weeks early. He couldn't take her breast, but he was Amy's first child - what did she know? He slept three hours a night, aspirating and refluxing all the time. He was diagnosed with Costello's syndrome. The same day, Daniel in hand, Amy ran into a woman she had met doing volunteer work. She 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 called right back. "Your son has CFC," she said. Amy was on the phone to Brenda Conger that afternoon.
The diagnosis didn't lift the burden. But the knowledge that her son was the product of a spontaneous genetic mutation, virtually at the moment of conception, "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 peaceful as a conscientious parent of a handicapped child can feel. "I've had a very, very blessed life," Amy told me. "I've had great parents. Great friends. Great jobs. Great schools. And I did think, 'It was my turn.' "
Amy was 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 10 a week, from the time he was one month old until he was 3, mostly paid for under the state's early-action program for children more than 30-per-cent 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 therapy 24 hours a day, whether in a feeding chair or asleep. The speech therapists signed for four months before Daniel made eye contact, but they signed anyway. Amy kept detailed, typed records of every medical appointment and medicine he ever had. CFC is full of surprises, but Amy's systematic attention is a model of how it needs to be approached.
The results were obvious. Daniel can watch the TV and laugh; he can be reliably distracted. He has the same knobby 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 takes the back roads. No one had noticed the difference before.
And of course there were Daniel's words. Of all the gifts I wish for my dear son, for him to speak a few words is the first I would grant. I love his Frankenstein walk, his pulpy hands, better for the flawed things they are. But to hear him speak his own name? To hear him call Hayley! loud and clear, as opposed to the Hehhh he gets out now and then? To hear him say, Ma, I love you? My heart is banging at the thought. Fuck you, Dada! would be the Gettysburg Address.
And not because of what they mean. Especially in delayed CFC children, language can have a plastic quality, as if stuck on from the outside. I don't need Walker to say, "I love you," to know he does. But if he spoke a word, it would mean he wanted something. Desire is intention. Intention is hope.
When Walker was 1½ years old, my wife and I sat next to one another 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 and Open your mouth; kiss and wet; yucky and you and breakfast and moon. Good, but not happy. Dar k, but not broken. Even sky. It helps to remember, of course, that it was Johanna and I who filled out the form: We saw his brilliance everywhere. But he actually 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 non-stop. 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, cleverer doctors, more money - 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 stayed home, not worked?
Every parent of a compromised child knows this secret envy, mines its thick seam of guilt. It's no more reasonable 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; we had the ready advice of Toronto's Hospital for Sick Children and Bloorview MacMillan Centre, two of the top pediatric institutions in the world. But nature 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 unfeasible.) Amy Hess won't even think about that decision.
"I wouldn't change having Daniel," she insists. "But I 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. The next one ought to be: How much?
25 January 05. My first visit to Stewart Homes, an independent, for-profit assisted-living organization that may - may, with the intervention of the special-needs group - have a space for Walker to live.
It was founded 30 years ago by Alan Stewart, who was himself a foster parent.
I was terrified at the door. I know what it's like to enter a room of handicapped kids: I was always astonished by the symphony of whoops and yowls that rolled over me when I visited Walker at his old school. But this is different: This is their territory, and the one who has to measure up is me. I stumbled into five children in a single room, but so isolated from one another, so deeply private, they might as well have been in separate galaxies. Gaspingly sad.
There are about eight children in each house - bungalow-style; spacious enough for the pumps and wheelchairs, lifters and toys; the floors seamless, carpet-free, for wheelchairs. The children are twisted but self-possessed: This is their place, a haven where they are no longer oddities. The school is 20 minutes away by bus ; the local doctor does house calls; there's a good hospital, a nurse on staff, a psychiatrist on call. One of the things Johanna doesn't like is the place's smell.
There's no room, of course. "Sometimes openings do come up in unpredictable ways," Diane Doucette, the director, tells us. I think she means that children die. I am happy to wait.
8 April 05. Office of the special-needs project. Seven years after I first broached the idea of getting outsiders to help us raise Walker, Minda Latowsky has found him a place. It's on the edge of Toronto, in Pickering, 40 minutes by car.
There are two mobile children there already: Kenny, 13, a tall, skinny kid who suffered brain damage in a near-drowning, but who can understand and make himself understood by fluttering his arms and vocalizing; and Chantal, who speaks and understands. Kenny will be Walker's roommate - a big-boy concept, terribly exciting. The typical beginning is two to four trial visits, with Olga [our nanny] staying overnight at the new house. "Then the move-in," Minda says. Then two weeks of no visits, to settle.
"It'll be months before you know you can put your coffee down, safe from flinging by Walker," Minda assures me. "But by then he'll be back at your place all the time."
Johanna seems at least numbed to our long-coming decision. But I'm a wreck. I've been drinking steadily, wandering the streets at night, even visiting strip clubs. Then I come home and climb the dark stairs in the quiet house and sit next to Walkie's bed. I burst into tears everywhere, in stairwells and the car and the basement and on my bike.
I feel as if the shape that he gave my life, this deep fate he handed me, has melted away. For what? For the sake of my own comfort? Because it was impossible to invent a new form of communal life we might have preferred? Because even then there is no such thing as a good solution? When I think of this house without him, my body becomes a cave.
The day I drove to Vestal, N.Y., to meet Brenda Conger and her family, Cliffy was waiting at the door. He looked like a more urbane, less afflicted version of Walker - curly hair, glasses, but slimmer and taller, CFC's Noel Coward. The Congers' Labradors, Henry and Jackson, walloped into the door. "Those dogs'll wreck you," Cliffy said, and laughed. It was the first piece of genuine conversation I had ever had with someone with CFC.
The first thing he wanted to see were photographs of Walker, his genetic cousin. Then he swayed over to help his mother tenderize the chicken she was cooking for dinner. Mr. Rogers was playing on the wide-screen TV in the background. Fourteen years old, watching Mr. Rogers; there were little signs like that, just hints. Cliffy was good for 10 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," he said of the landing nook where Brenda Conger had changed the CFC landscape. "This is the new room," the office his father was slowly adding. He showed me the bathroom, and the shower especially, and the shower curtain most of all. "Keep that closed," he said.
We continued down the hall. "This is my daughter's room," Cliffy said.
"Your daughter? You mean your sister."
"Right."
Parts of his mind were his own, while other pieces seemed inherited, as if he bought them pre-assembled off the showroom floor. Neurologists have described the same feature in the normal mind, the clip-in societal set piece - but in Cliffy it was slowed down and you could see how it operated.
His bedroom, his most private brain, 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 and I talked about the wilderness days of CFC before anyone knew anything, and about how he had taught Cliffy to ski by walking the bunny hill in ski boots for two years before Cliffy felt comfortable enough to try it on boards - while we adults did that, Cliffy climbed onto his John Deere tractor, a full-sized, sit-down, yard-work model. He started the motor. Then he drove the tractor out of its shed and around the yard. Then he backed it, and its hitch-mounted trailer, into the shed. He did it perfectly.
"I can'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 18-year-old with a licence," Cliff said. It took four years to teach Cliffy to drive the tractor. He started by cutting the grass with the boy in his arms.
At 10:47, Brenda roused Cliffy from the TV. "Cliffy, 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, Cliff and Cliffy had been up since 7 a.m., making their Sunday omelettes. Cliffy 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. Experience was all. "You want mushwooms?"
"Are you a mushroom eater?" I asked.
"Yeah."
"Me too!"
"Yeah!" he fairly shouted. I knew that bang of glee. Walker did that. "He's a mushwoom eater!" he called to his father.
He paused. "What about pickles?"
"No," I said, "no pickles."
"Whoa!" He looked at me with new respect, the kind you accord a fellow who stands against the orthodoxies of the age.
"You a pickle man?" I asked.
"Yeah!" Again the grunt of enthusiasm. Maybe that was why Walker did it too - when he felt we were equals.
All we had needed was an interpreter, a boy who spoke both our languages.
26 Feb 06. Picked Walker up today. He seems to have not one but two girlfriends: Chantal, who is now wearing a body brace for her scoliosis, and Krista Lee, a lovely 14-year-old girl in a wheelchair whom Walker adores. Chantal is bossier and pushes herself into Walker's ambit. Krista Lee waits and so he goes to her.
Katie, one of the phalanx of men and women who work in the house, has even devised a way to stop Walker from hitting himself, without resorting to the foam helmet he hates - empty Pringles cans, reinforced with tongue depressors and electrician's tape, padded at the wrists and elbows and upholstered in bright fabric. They prevent him from bending his arms and levering his punches up to his bean. After years of misery, relief in five cents' worth of cardboard.
I am still ashamed when people ask why they don't see Walker as much any more; I can't admit he lives mostly here. Johanna's more modern: "I feel as if he belongs to others now, as well as us." He's certainly settling in. Not long ago Olga and Johanna brought him back here from a weekend at home. Walker made a dervish entry, knocked over the trash can and buried his head in the breasts of Trish, his night worker. Then he took Johanna and Olga each by a hand, and gently but firmly escorted them to the front door. He wanted them to leave. Strange bout of liberation!
He's on a new dose of risperidone and a new drug for reflux, and his moods are more even. But it's his emotional confidence that's leaping forward. Living only in our world, I'm sure he saw his limitations everywhere. In his new vacation home, as I think of it, surrounded by peers, he's as solid as anyone. I hope that is the gift we gave him by giving him up.
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 her two closest friends. They 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 - '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?" one friend 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 he 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 basement 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 50 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 grass. She began a long introductory incantation. She spoke Walker's whole name: 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 crashing 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 the other friend.
"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 he 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 did 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 one of her friends, "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."
Her other pal paused for a beat. "Dirty old shaman."
Ian Brown is a feature writer for The Globe and Mail.
THE BOY IN THE MOON THE SERIES
Last week, Dec. 1:
Part 1: The Unexpected Son
Ian Brown relates the intimate
experience of life with Walker - the story of his diagnosis and the epic of his care.
This week:
Part 2: Finding Walker's Place
Next week, Dec. 8:
Part 3: Walker, My Teacher
What do children such as Walker have to tell us, both scientifically and as human beings - and what does society owe them in return?
READER RESPONSE WALKER IN THE MIRROR
After the first part of Walker's story appeared last week, there were strong reactions. On Internet blogs, many families with disabled children compared Ian Brown's situation with their own. Globeandmail.com is creating an online hub where these commenters can connect.
One of those blogs belongs to Emily Yeskoo, a Toronto 14-year-old who suffers from a rare, fatal neuro-degenerative disease called MLD, diagnosed at 10. It has no known treatment or cure. Gradually Emily lost the ability to walk, talk or eat. Today, she is bedridden; though cognitive and aware, she is unable to communicate. Her mother, Lindsey, has carried on writing the blog to keep far-flung friends and family informed - while Lindsey is Canadian, her husband works for the U.S. Foreign Service; Emily was born in Finland and her condition became critical in Shanghai. Lindsey writes "as" Emily to "give her the voice she would otherwise still have." Here is an excerpt.
1st Sunday in Advent
Hi, everyone. The forecasted ice storm never inflicted us. Instead we opened our eyelids to inches thick of new fallen snow! Sensational!!! All of nature around us has been blanketed with a reverent, yet bright-eyed hush. Daddy and Chris went off to church earlier, and now they are running "man" errands ... with Chris driving! It's his first experience behind the wheel, navigating streets of snow. My little sister stayed home with me and Mom (no nurse Karla today!); Madeleine is recovering from her Wave Pool party yesterday in Richmond Hill, a birthday party. She was underwater so much, having a ball, that her eyes are still hurting from the chlorine!
I want to mention something that happened yesterday. Do any of you happen to read The Globe and Mail newspaper? I never read it myself, but my dad did, first. There was a story, pages long, by another dad in Toronto whose name is Ian Brown. My mom took one look, saw the beginnings of the story, read a tiny bit ... then it took her all day, until the evening time, before she could summon up the wherewithal to actually read the whole account. I watched her, from my bed. She was fighting back tears, gulping, for a long time. Then I realized after a while what all those pages were about. A parent was describing in great detail what it was like living with a child with a disease not unlike mine. The boy's name is Walker and he is 11.
There are a few differences between Walker and me. But not as many as you might think. He too is treated by the Complex Care Team at Sick Kids Hospital ... really, our family lives a too similar experience. To see such a full account, so that other normal people could get a window into how some of us families really live - quite mind-boggling!
To continue the conversation please see globeandmail.com/boyinthemoon.
WHAT YOU CAN DO
People with rare "orphan" syndromes and other complex conditions challenge medicine's organizational limits and procedures. For this reason, supporters of Walker Brown's long-time pediatrician (who died in March of colon cancer) came together in 2006 to create the Dr. Norman Saunders Initiative in Complex Care at the Hospital for Sick Children in Toronto, with the aim of developing comprehensive care for such children.
To learn how you can help, contact Arlene Manankil at 416-813-8742 or by e-mail at arlene.manankil@sickkidsfoundation.com. Or visit http://www.sickkidsfoundation.com/saunders.