The Boy In The Moon Part 5

"Are you a mushroom eater?" I asked.

"Yeah."

"Me too!"

"Yeah!" he fairly shouted. I knew that bang of glee from Walker. "He's a mushwoom eater!" he called to his father.

Cliffie 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, or at least on the same page.

All we had needed was an interpreter, a boy who spoke both our languages.

A lot of CFC parents, I discovered, lived a lot of their lives on the Internet. They met through CFC International, Brenda Conger's online chat room, or listserv. Parents with a new CFC baby burst into the chat room like travellers staggering into an oasis after years in the desert. They signed off as if they were saying goodbye to longlost siblings: All our love Wife to Malcolm Mam to Lewis 9 James 7 Amy 4 CFC confirmed And they always signed off the same way. "Confirmed" meant confirmed genetically, the ne plus ultra ne plus ultra of CFC status. If you were confirmed-a genetic test for CFC had become available after the spring of 2006-your DNA could be included in research studies. Parents longed for the confirmation. Some children had been clinically diagnosed as having the similar-featured Costello syndrome or Noonan syndrome, but were then revealed, genetically, to be CFC; others who had been clinically diagnosed as CFC were re-diagnosed as having Noonan or Costello syndromes. (There is a faction of geneticists who believe that CFC and Costello syndromes are not separate syndromes at all, but merely variants of Noonan syndrome, which is more widespread.) Conger never kicked any of the children who were re-diagnosed as non-CFC out of her network, but the news was often devastating to their parents. of CFC status. If you were confirmed-a genetic test for CFC had become available after the spring of 2006-your DNA could be included in research studies. Parents longed for the confirmation. Some children had been clinically diagnosed as having the similar-featured Costello syndrome or Noonan syndrome, but were then revealed, genetically, to be CFC; others who had been clinically diagnosed as CFC were re-diagnosed as having Noonan or Costello syndromes. (There is a faction of geneticists who believe that CFC and Costello syndromes are not separate syndromes at all, but merely variants of Noonan syndrome, which is more widespread.) Conger never kicked any of the children who were re-diagnosed as non-CFC out of her network, but the news was often devastating to their parents.

Walker was five before CFC International existed online. By the time he was ten, parents of children with CFC had created an online community. Monitoring letters on the CFC listserv over the course of several years was like watching a small town coalesce out of a galaxy of darkness-a light would blink on, and then another and another, and slowly, very slowly, the lights became a village. Cases of CFC began to turn up in other parts of the world-in Australia and Lebanon and Holland, a second case in British Columbia, even a second in Toronto.

The CFC listserv read like a vast epistolary novel. Newcomers would burst on the scene, teeming with intimacies and information; the old-timers welcomed them with rea.s.suring arms. What no one mentioned was how similar the stories sounded, and how the complaints had remained the same for years, without remedy-the troubling quirks that new parents had been a.s.sured by doctors would go away, but which the rest of us knew likely would not. I remember a woman named Kate describing with pa.s.sion the attributes of her little boy, an eight-year-old who had only just been confirmed with CFC. "He cannot talk and I have no idea if he will but he does get across in his own way what he wants," she wrote. "He gets very frustrated sometimes and bites his hands or bangs his head. He is such a character and has brought such joy into our lives. But to be honest there are times I so wish I could just be his mummy and not a nurse/carer as well, I don't begrudge anything that will help his life be easier but it has been hard sometimes."

The problem, as any experienced CFC parent reading her letter knew, was that there wasn't anything that could make his life much easier.

Reading the listserv inevitably led to comparisons, and comparisons were never a good idea. Sara and Chris, a couple in Ma.s.sachusetts, had a daughter named Regan. She was two and a half years old.

Regan signs and speaks. I think she said "ice cream" tonight, although she would never try to eat it. She is a picky eater but is slowly broadening her tastes. She points to our plates and says "MMMMMM" but refuses most of what we offer her.... Regan is developmentally delayed and her gross motor skills are much more behind than her communication and fine motor skills. She cannot walk or get into a sitting position yet but she tolerates standing, scoots on her behind and just recently can pull herself from a sit to stand position Was it better to be Regan, who is a better communicator, or Walker, who is a better mover? It was impossible not to ask yourself that question, and impossible to answer. The United States was pus.h.i.+ng hard to establish compulsory state early intervention programs for any child as young as three months old who displayed a need for them. No such program had existed when Walker was a baby, and they are still rare in many parts of Canada. British Columbia was ahead of the game where custom-designed living arrangements were concerned; Ontario was very good about providing respite care. What did not exist was a consistent, reliable, guaranteed, easily accessed program of help and care for congenitally disabled children. It was hard not to conclude that the non-disabled world wanted to forget about these children, or at least not be reminded of them.

Some parents came late to CFC International after years of thinking their children suffered from other syndromes. They were often the most complicated cases, with cross-indicating symptoms. As a result, reading the listserv you never knew when you'd happen upon something completely new to worry about. There were dramas within dramas. A woman named Renee was caught in a hurricane in New Orleans in the fall of 2008 while her daughter Harley, who had CFC, fought for her life in hospital. Renee sent updates over the Web as if Harley belonged to everyone: Hey my family. I have a few minutes to type this time. I am not for sure if I mentioned it, but the nurses from our hospice came out and in Harley's left lung, the only air being exchanged is what the bipap machine is pus.h.i.+ng in.... The hospice nurses said she could go tonight, it could be 4 or 5 days, and then again Harley could do like all the other times and beat this, but they don't seem to think she will. Harley is in really bad shape. Keep her and us in y'all's thoughts and prayers. G.o.d Bless!!!!

Harley eventually died, in March of 2009. Parents of other CFC children wrote in to Conger's website for weeks afterwards, to praise her struggle and honour her memory. Like them, I never met Harley, but I knew a lot about her. She was another member of my son's other family.

Then there was the daily bread of the listserv, the habitual discussions of ear ca.n.a.ls and earwax, feeding issues, sodium levels, seizure medications, the trials of p.u.b.erty and the pros and cons of delaying it through hormone therapy, the prevalence of complicating autism within the CFC spectrum (low, but increasing), G-tubes, who could walk and who couldn't and what could be done about it, who could speak and who couldn't (ditto), who had hair and who didn't, who liked to be naked and who didn't, how to keep the kids occupied, and what might possibly make them sleep. Some mothers, such as Amy Hess, knew more than any doctor, and were widely consulted for medical and technical help. Hirschsprung's disease, a congenital condition of the bowel, made infrequent but harrowing appearances: a section of the large bowel was aganglionic (that is, the bowel lacked the normal enteric nerves that help a bowel movement along), which in turn resulted in a bowel obstruction, which in turn created a permanently swollen bowel known as megacolon. It sounded like an amus.e.m.e.nt ride and shared some of its terrifying qualities. Word for word, bowel movements and eating disorders were the most frequently discussed topics, along with the names of anti-constipation remedies, MiraLAX and Kristalose and Dulcolax, their brand names light and wondrous, like a family of famous singing sisters.

Occasionally there were bright bursts of insight. When a mother named Roseanna in Colorado admitted to despair and shame over wis.h.i.+ng her child was normal, another mother, Stacey, replied with clarity and compa.s.sion: I understand, as all CFC parents do, the challenges of our special kids. I think the hardest thing for me was giving up the dream of the typical family. Logan wasn't diagnosed until he was 5 and for the first 2 years I kept thinking "well after we fix THIS he'll be normal, after we fix THIS he'll be normal" and kept clinging to the hope that he was going to be like everyone else's children. It would upset me when I heard other new moms complaining about things I could only dream and hope for (eating everything in site, being fat babies, starting to run everywhere etc.). And I was OBSESSED when figuring out what was wrong with him on my own. I had a child that needed multiple surgeries, wouldn't eat, threw up EVERYTHING up to five times a day, and no doctor would really listen to me or understand what I was going through. At first they felt I wasn't trying hard enough. Then, one day when he was 2 years old I realized I was so obsessed with finding his problem and fighting this battle myself that I wasn't enjoying him ... because I was so heartbroken over my dream of "normal" [being] crushed. So, from that point on I accepted Logan as Logan, and I didn't think about what he should or could be doing but what he WAS doing. Though there are hard days and challenges, there are many GOOD days and now this life for me is normal. I promise it will get easier and no doctor would really listen to me or understand what I was going through. At first they felt I wasn't trying hard enough. Then, one day when he was 2 years old I realized I was so obsessed with finding his problem and fighting this battle myself that I wasn't enjoying him ... because I was so heartbroken over my dream of "normal" [being] crushed. So, from that point on I accepted Logan as Logan, and I didn't think about what he should or could be doing but what he WAS doing. Though there are hard days and challenges, there are many GOOD days and now this life for me is normal. I promise it will get easier.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 pa.s.sed without someone thanking the Lord for the hidden "blessings" of having a CFC "angel," without someone else insisting that G.o.d "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 h.e.l.l. On the h.e.l.lish 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, rea.s.suring 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 G.o.d," she told me years later. It was hard to think of Walker as a gift from G.o.d, unless G.o.d was a s.a.d.i.s.t 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 ma.s.sive 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 pa.s.sed 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 undoc.u.mented 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 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. 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 cla.s.s. 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 cla.s.sroom 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 pa.s.s 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 cla.s.sroom 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 shoes and and more 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 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 G.o.d'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 cla.s.sroom. "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 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 G.o.d'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 sh.o.r.e 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' circ.u.mstances 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.

Sh.e.l.ly 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 Sh.e.l.ly to be an autism spectrum disorder. The thought of having two disabled children staggered me, but Sh.e.l.ly 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 hards.h.i.+p 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 G.o.d, it's like playing roulette.

"Right now, I think Kinley has-oh boy-without trying, taught me how to live with joy, despite tough circ.u.mstances. 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 rea.s.suring-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 gla.s.s 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 astonis.h.i.+ng 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: crus.h.i.+ng 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 embarra.s.sed.

"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 h.e.l.l of looking after a disabled child, to try to use that disability to scam the government and its taxpayers.

The provincial government's alternative-relying on extended families to care for a disabled child-didn't work anyway. The McCann clan was an extensive one-forty-four people on Bernice's side, another eight on Fergus's. None of them had ever offered to take Melissa for a weekend. Regardless of how one felt about that (and Bernice sounded slightly p.i.s.sed: "They haven't stretched themselves in twenty-one years"), it was no basis for public policy. "The government should be giving you what your family needs," Fergus insisted. "Fair is not equal. Each person has different needs."

Still, the delicate balance between what you could ask for and what you deserved, and how much you deserved it, was always topmost in the minds of the McCanns. It was only after Fergus and Bernice begged and cajoled for years that the British Columbia government agreed to pay for a pair of day workers to live with the McCanns. They tried that for a while.

But one day Bernice arrived home to find her furniture rearranged. Another afternoon she discovered the fuzz had been shaved off Melissa's head by the workers in order to make her less noticeable. When Bernice told me these stories, even I wondered if she wasn't asking too much. She had a severely handicapped child, and the government was willing to pay for an outside helper to live in her house to help take care of that child: it was better than nothing. Perhaps some grat.i.tude was in order. But the more I thought about it, the more flawed that argument seemed. Under what other circ.u.mstance would anyone consider it a boon that the government would pay for a bossy stranger to live in your house?

Melissa was an anomaly, and an upsetting one at that, and upsetting anomalies are not what political bureaucracies do best. The disabled are a challenge to everyone's established sense of order: they frighten us, if not with their faces, then with their obvious need. They call us to be more than we ever thought we would have to be. The very nature of Melissa's disability was an incurable problem, a sign of a flaw and a failure: there was no permanent one-size-fits-all solution, no matter how practical and generous the bureaucracy tried to be. Day workers! Funding by square footage per inst.i.tution! Group homes! All good ideas, and all doomed to fail as well, eventually, for someone. And of course we all wanted solutions, bureaucracies and parents alike: we all wanted to free ourselves from having to face the darker truth that each disability is personal, unique, and possibly unsolvable unsolvable.

Walker is a fact. He will be the way he is all his life. He is many things to me, not least a reminder of my own fragility and fear. I can afford to admit these failures, in the privacy of my own mind, but no bureaucracy can. And so the bureaucratic solution instead becomes the Grand Solution, applied indiscriminately. This is the unavoidable history of mental r.e.t.a.r.dation and mental illness alike. Fifty years after Philippe Pinel wrote A Treatise on Insanity A Treatise on Insanity in 1801, thereby kicking off the era of asylums, one in ten Parisians had spent some time in one. Asylums were the one-size-fits-all solution of their day. in 1801, thereby kicking off the era of asylums, one in ten Parisians had spent some time in one. Asylums were the one-size-fits-all solution of their day.

But what Fergus and Bernice McCann missed most of all was not money or help, but privacy. Melissa had thrust them into the public care system, had forced them to fight for everything she needed. Melissa was disabled, but looking after her had disabled Bernice and Fergus in turn. "If you have a disabled child," Fergus said, "you can't just watch the world go by, the way you would if you had a typical child. You fight for things, put yourself in these awkward positions, and you lose a lot. We've lost the right to just have a family and be left alone."

Inevitably, Fergus and Bernice worried about what would happen to Melissa when they were gone. They had devised a plan whereby Melissa could live in her own home with three young women to help her. They'd bought her a pretty house, roughly twice the size of their own, which cost $573,000. ("That's twenty-five years of my go-to-h.e.l.l money," Fergus said.) The government had programs that would help pay for Melissa's companions; the operation of the house would be overseen by a board of directors that included Melissa's brothers.

When I spoke to Bernice and Fergus, they were "transitioning" Melissa into her new home, into her own life. She seemed to be enjoying the prospect. Their sons were moving out too, and Bernice and Fergus were suddenly looking at an empty house. "This is happening much sooner that we would choose to have any of our children leave home," Fergus said, "but they decided to do it all at once." After years of longing to be alone when he couldn't be, soon he would be. He felt surprisingly desolate.

There was a part of me that wanted to say to Fergus, Well, you got what you asked for Well, you got what you asked for. I wouldn't say that to an average father of normal children who despaired for years of having a moment to himself, and then missed his kids when they began to move away. But Fergus and Bernice McCann decided to make the world take notice of the plight of their daughter. Even I, who knew better, wanted to see them suffer for making me feel their agonies.

There was always another story to top the last one. However difficult someone's life had been-and I often had to coax people into complaining, so strong was the impulse to appear unaffected-there was always someone else who had it harder.

Angie Lyd.i.c.ksen still lived in the town where she grew up in Connecticut. She was forty-two years old and worked as the manager of a dental office. She had two boys, Eric, who was ten, and Luke, who was eight and had CFC. Before giving birth to her first son, she had been "desperate" to have a family; she had three miscarriages and finally resorted to fertility drugs. But with Luke she became pregnant quickly and just when she wanted. "I wanted to have them close together," she told me. Her pregnancy with Luke was "more than perfect," and even when she went into labour two weeks early the doctors considered her full-term. "My problem with pregnancies was always getting to the end of them," she said, "so when I got to the end with Luke, I never imagined a whole other life would start." A strange reward for persistence.

Her life changed in an instant. "From the second he came out, all h.e.l.l broke loose. As soon as he came out, and they placed him in my arms, both my husband and I knew something was wrong. He wasn't connecting with us." He was moved quickly to the newborn intensive care unit. Meanwhile his mother began to hemorrhage in her hospital room and pa.s.sed out. When the nurse found her, she pa.s.sed out too. All in all, a day of note. Luke stymied his doctors; no one could diagnose his ailment. Angie carted him to Children's Hospital Boston and to countless Connecticut health care complexes for three years before someone suggested Costello syndrome. She accepted the diagnosis with reservations-she didn't think Luke looked entirely like other Costello kids. Then she read an article in Rosie Rosie magazine. The article, as it happened, was written by my wife. When Angie read Johanna's descriptions of Walker, she immediately took Luke and the magazine to her pediatrician and asked it if was possible that Luke had CFC instead. The pediatrician couldn't have cared less. "He told me to take him home and love him. 'You got what you got,' he said. So I got rid of that doctor." magazine. The article, as it happened, was written by my wife. When Angie read Johanna's descriptions of Walker, she immediately took Luke and the magazine to her pediatrician and asked it if was possible that Luke had CFC instead. The pediatrician couldn't have cared less. "He told me to take him home and love him. 'You got what you got,' he said. So I got rid of that doctor."

She embarked on a long and frustrating search for a more precise diagnosis. She tried to see John Opitz, but Opitz was busy and couldn't see Luke for a year. A year A year. She eventually met the geneticist in Salt Lake City, but Opitz didn't think Luke was CFC: the boy's features were "softer" than those of a typical CFC child (Angie had noticed that herself), and "he didn't like the fact that Luke had eyebrows": 95 percent of the children with CFC symptoms who had eyebrows turned out to be Costello kids. To Lyd.i.c.ksen, such judgments seemed like guesses.

She carted her boy to the annual conference of Costello children, but she still didn't think he fit. On a second visit, in 2005, she met a researcher from the Comprehensive Cancer Lab in San Francisco who was trying to isolate the genes responsible for both CFC and Costello syndromes. Luke took the test for Costello syndrome: he didn't have it. Lyd.i.c.ksen "was just devastated. We wanted so badly to fit somewhere. Instead, we were thrown back into the unknown again." A few months later, as part of California geneticist Kate Rauen's pioneering research, Luke was confirmed as having CFC. But he was much worse off than most of the other CFC kids. He didn't speak (though "his hearing is very good," Lyd.i.c.ksen insisted); she wasn't sure about his vision (he watched preschool shows on TV from inches away); to this day he requires a walker to get around, and prefers crawling; at three, he began to grow suddenly as he went into precocious p.u.b.erty (a rare but noted feature of CFC; as if the regular features of the syndrome weren't taxing enough, Luke has had to submit to a pituitary shot every three weeks, to hold his hormones in check until he's older). Unlike most CFCers, Luke is tall: at nine years old, he's five foot eleven. His cardiac issues have diminished (like Walker's), but (like Walker) as he grew older, he began to have seizures. Luke recognized his mother and father, his brothers, his grandmother; he was very affectionate, though (like Walker) that didn't begin until he was five. Before that (like Walker) he preferred his own company. "I'd say that he's anywhere from fifteen to eighteen months old," Angie said. "He's definitely under two years old. He definitely has no verbal communication. He laughs, he plays-but he doesn't play with too many toys." Like Walker, he loved to pull his hat off again and again, to stymie whoever was trying to make him wear it. "I think Luke, for the most part, he's happy," Angie said. "When he does cry, he usually cries for a reason. I think his quality of life is good, for the most part-I think he's happy in his own little world. And for the most part I'm happy that he's happy. Sometimes it breaks your heart, because he's stuck in his own little world. But sometimes I wonder if it's not better there. Sometimes-because he goes to bed with a smile and wakes up with a smile-I like to think that he's happy all the time. I like to think he is."

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

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

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

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

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

I was always looking for a context in which to make sense of Walker, in which his disorganized life (and my unavoidable devotion to it) might take on more meaning and purpose. I thought I might find it in the lives of other children with CFC, and in the example of their parents. To my surprise, while it was sometimes rea.s.suring to know he was part of a larger community, and that I was not alone, the nature of that community-a hundred children and their parents, invisible in the greater world, desperately trying to quell their pain and rescue some semblance of normal life from an abnormal circ.u.mstance-was more complicated than it looked, sometimes as upsetting as it was rea.s.suring. I now knew that "Walker and his ways," as Johanna described them, were not unique. What I had yet to find out was why why he was the way he was. And so I turned to science, to see if the laboratory could explain my boy Walker. he was the way he was. And so I turned to science, to see if the laboratory could explain my boy Walker.

ten.

These are the glossary terms that "help with understanding cardiofaciocutaneous syndrome," as listed on the Genetics Home Reference page of the United States National Library of Medicine: apoptosis; atrial; autosomal; autosomal dominant; cancer; cardio; cardiomyopathy; cell; cutaneous; differentiation; failure to thrive; gene; heart valve; hypertelorism; hypertrophic; hypotonia; ichthyosis; incidence; keratosis; macrocephaly; malformation; mental r.e.t.a.r.dation; muscle tone; mutation; new gene mutation; nucleus; ocular hypertelorism; palpebral fissure; proliferation; protein; ptosis; pulmonic stenosis; RAS; seizure; septal defect; short stature; sign; stature; stenosis; symptom; syndrome; tissue.

The language of Walker's strangeness held me captive. New words had been invented for a new creation, infused with the pretend exact.i.tude of scientific nomenclature, as if all the labels said something helpful and useful, which of course in any comparative sense they did. The alluring multi syllabic complexity necessary to describe a simpleton, to use the old, once-scientific word for such a boy. Everything about Walker was complicated by something else, and there were many days when I appreciated that, when it deepened him, and gave me more to think about. Sometimes it was all there was to think about.

I was sitting at my desk at the Globe and Mail Globe and Mail, the large daily newspaper where I work, the morning I read the scientific paper announcing that a geneticist named Kate Rauen had found a mutation in three genes a.s.sociated with CFC. It was a Tuesday in April 2007. My desk sits out in the open: it's a congenial place to write, as abattoirs go. But that morning I had to get up and walk outside. I couldn't catch my breath. A gene that caused CFC: after eleven years of living with the mystery of Walker, the notion was exciting, but also terrifying. My relations.h.i.+p with Walker, after all, had been personal, and private; we operated by our own standards, by what worked between us. I "spoke" to him and he "spoke" to me, clicking our tongues back and forth to one another to let each other know that we were paying attention, that we knew the other was there, and listening. Now there was a gene, an impersonal scientific cause, at the root of his affliction. What would it tell me? And would it prevent me from believing any longer in what I told myself were my son's secret capacities? Would I still be able to take comfort in our private language of click-to offer just one example-if the gene said it was pointless, that such a connection was beyond his capacities? So far I had already had to share my son with his other home. Would I now have to share him with the lab?

Not to say there wasn't huge hope in the discovery. If I knew what genetic misstep had caused Walker's troubles, I would have a hook to hang those troubles on. I might even have a cure for them. There would be a firm and una.s.sailable cause, something to blame and something to fix-a shrimpette of concrete fact in the sea of speculation and vagueness that const.i.tuted his life, and ours.

Two weeks later I flew out to San Francisco to interview Dr. Rauen. At the airport, I rented a car with a GPS unit. It was my first time. Until then, I'd always used maps. I liked maps, liked the way they let you get used to the overview of somewhere new and unfamiliar, in plan form, before the place became details, close up and unavoidable.

With GPS, I could fly into a vast complicated confusing city after dark, rent a car and plug in the address of where I was supposed to end up. The GPS unit told me to turn left out of the rental lot and spat me instantly onto a chain of highways, a speedy tube of lights that ran for a long time until finally the tube dumped me out into a hotel parking lot. GPS made me feel like I was getting somewhere fast. The downside was that I never knew where I was in the bigger picture. GPS took you right where you already knew you wanted to go, and cut out the less efficient side trips. Just like a CFC gene, it turned out.

The genetic research labs at the Comprehensive Cancer Center in San Francisco, where Kate Rauen worked, were lit like the inside of a refrigerator and cluttered with textbooks and tubes and stoppers and scales and micro-array scanners.

The scientific papers the geneticists wrote-largely for one another-had t.i.tles that were incomprehensible to a layman, such as "Keratosis pilaris/ulerythema ophryogenes and 18p deletion: Is it possible that the LAMA1 gene is involved?" The geneticists themselves bore the slightly startled air of soldiers who had just emerged from the deep jungle, only to be told that the war they had been fighting had been over for twenty years. They were fond of unusual, non-human screen savers: a photograph of a cat, say, asleep in a tiny log-cabin cathouse. (I once stepped into an elevator full of young geneticists leaving work. It was Hallowe'en. Two of the female geneticists in the elevator were wearing devil horns on their heads. "Going out tonight?" one of the guys ventured. The women shook their heads. I can't say I was surprised.) The morning I showed up at Rauen's lab, her colleague, Anne Estep, was feeding liquid medium into Petri dishes. The Petri dishes contained clones of twenty-nine different mutations of one gene that Estep and Rauen had isolated in the DNA of people with CFC. Rauen had yet to show up for work, so Estep, a personable, blond-haired woman in her thirties who openly admitted her love of lab work, undertook the challenge of explaining the complicated genetics of CFC to me.

She saw the entire process from a scientific height, as evidence of the elegance of human biology. "There are just so many things that can go wrong in conception," she said. "The majority of pregnancies are spontaneously aborted, or miscarried very, very early in the pregnancy-it's just nature's way of allowing only the right combination to come to term. Even to be born, you are already one of a minority of conceptions-so much has had to go right to get to that point."

This was a new way of understanding Walker-instead of broken, he was simply slightly flawed, like a discounted but perfectly wearable pair of shoes at an outlet mall. He was still "a genetic configuration," as Estep put it, "that is compatible with life, is a living, breathing human being. So there's a wide variance. They all have two arms, two legs. Most of the children have a range of emotions. They're human." Two weeks before I met her, Estep had been introduced to Emily Santa Cruz-her first encounter with a breathing embodiment of the CFC genes she had been studying in a dish in the lab for eight months. She found the encounter "very moving," although she had been surprised, she said quietly, "by how severe her delays were." Even for a dedicated scientist such as Estep, there was a gap between the life she studied in the lab, and the life itself.

Kate Rauen was in her early forties, short, blonde, vastly energetic. She kept an office at UCSF Children's Hospital across the city, where she ran a clinic, as well as another at the Comprehensive Cancer Center. She was good at clarifying complicated genetic processes. "Here's your chromosome," she told me later that afternoon, as she drew circles on a piece of paper to explain how a cell operates. "On this chromosome, here's your DNA. On this DNA are genes, kind of, maybe, next to one another. That gene makes an RNA, and then that RNA makes a protein. And proteins actually are the ones that float around in the cell and do the work." There are roughly 25,000 protein-making genes in the human genome, and another 35,000 regulatory genes. Some proteins fold up in complex patterns (again, according to instructions from the genetic code) and form cells, which in turn form human tissue. Other proteins operate as group managers, controlling other enzymes. (Bureaucracy is everywhere.) The RAS family of proteins and enzymes (for rat sarcoma rat sarcoma virus, which was involved in its discovery) are managers-specifically, molecular onoff switches for a group of signalling pathways that communicate between a cell's membrane and its nucleus, to control cell growth. "The nucleus is the brains of your cell and the only way it gets instructions is from outside of the cell," is how Rauen put it. "And the instructions come in the form of signal transduction, or molecules talking to one another, which will actually end up telling the nucleus what to do." The entire process operates like a game of telephone. An enzyme or protein sidles up to the outside wall of a cell, and tells it to do something; an enzyme on the other side of the cell wall pa.s.ses the instructions along to another series of enzyme systems within the cell, and so on through the body of the cell until the message reaches the nucleus-which does what it thinks it has been told. virus, which was involved in its discovery) are managers-specifically, molecular onoff switches for a group of signalling pathways that communicate between a cell's membrane and its nucleus, to control cell growth. "The nucleus is the brains of your cell and the only way it gets instructions is from outside of the cell," is how Rauen put it. "And the instructions come in the form of signal transduction, or molecules talking to one another, which will actually end up telling the nucleus what to do." The entire process operates like a game of telephone. An enzyme or protein sidles up to the outside wall of a cell, and tells it to do something; an enzyme on the other side of the cell wall pa.s.ses the instructions along to another series of enzyme systems within the cell, and so on through the body of the cell until the message reaches the nucleus-which does what it thinks it has been told.

RAS in turn activates other "downstream" signalling systems, such as the mitogen-activated protein kinases (the MAPK pathway) that control even more specific cell functions. RAS is an infamous route among medical researchers: 30 percent of cancer tumours display some form of RAS deregulation, where either cell growth has run out of control or cell death has stopped, because of an incorrect instruction, or signal transduction.

"I'm just a dumb old medical geneticist," Rauen told me. "I just see patients and try to diagnose what they have. Meanwhile I'm with all these smart biochemists that studied signal transduction. And I just remember looking at these pathways and thinking, oh my gosh, one of these days they're going to find genetic syndromes that are involved in these signal transduction pathways, part of this alphabet soup."