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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."
Part 2 continued on Chapter 3…