The Boy in the Moon: A Father's Search for His Disabled Son (13 page)

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

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

“What, all three of you?” Cathrin said.

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

“There was a blanket in the middle of this 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 fifty bucks and put a pack of cigarettes on the blanket.”

“What was Walker doing?”

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

“The shaman lit a pipe. She lit some sage 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 Tecca.

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

“Get out.” This was me.

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

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

I wanted to lie down on the hallway floor.

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

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

Tecca paused for a beat. “Dirty old
shaman
.”

eight

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

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

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

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

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

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

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

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

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

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

“Do you think she understands you?” I asked.

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

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

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

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

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

Out in the backyard of their house in Arroyo Grande was an old shed. Next to it was an old chair. Next to the chair was Ernie’s shrine. That was one word for it, anyway. (“He says this is his identity,” Molly had said, as she gave me a tour of their place. 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 sniffing them and saying, “Buh! Wuh! Wuh!” Ernie liked to sit in the chair when Emily played in the backyard. He could sit there in his shrine and watch Emily be herself.

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

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

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

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

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

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

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

The Congers crashed into the hour-by-hour life of a family with a disabled child. Suddenly they had no time and less money. “We’re middle-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 three before doctors diagnosed him. Not that a diagnosis explained much: Cliffie was only the twenty-second case of CFC Brenda could find in the medical literature.

The syndrome, or at least a wide group of symptoms that seemed to be associated with a specific physical appearance like Cliff’s, had first been publicly described at a March of Dimes conference in Vancouver in 1979, in a presentation titled “A New Mental Retardation Syndrome with Characteristic Facies, Icthyosis and Abnormal Hair.” That the presentation had even been made seemed like a small miracle: the identifying team of clinical geneticists were spread across the United States, and had come together largely by chance. One of the members of the team was John Opitz, a legendary geneticist who had already identified and named half a dozen new syndromes. Opitz claimed to have seen his first case of CFC in the mid-1960s. Even so, it was 1986 before the affliction had a name. Conger found only a dozen scientific papers that mentioned the syndrome: most were just short reports of newly discovered cases. CFC was a mystery, and an arcane one at that.

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

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

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

Molly later became one of Brenda’s board members. When they came across a paper by a San Francisco geneticist, Kate Rauen, who was investigating CFC, Molly called her up. With Dr. Rauen’s encouragement, Brenda and Molly hired teams of phlebotomists to draw blood at the family conferences, which by then were happening every two years. In 2005, using the DNA they gathered from twenty-three individuals, Rauen eventually would identify the first genes known to be associated with CFC. She named Brenda and Molly co-authors of the discovery, only the third time non-scientists have been named as co-discoverers of a gene. (As a result, CFC International will have a stake in any future patents developed from their identification of this gene.)