The Boy in the Moon: A Father's Search for His Disabled Son (14 page)

These days Brenda Conger steers the world of CFC from the teeming offices of CFC International—the second-floor landing of her house, tucked in behind the stairs. She also oversees the Internet site on which CFC parents around the world discuss everything from seizure treatments to life expectancy, which even with luck won’t reach past middle age.

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

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

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

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

Daniel was a six-year-old CFC miracle. He could talk. He was in school and could read at grade level, better than most of his 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 is not so lucky: he suffers from ulcers in his intestines, serious allergies and immune problems, pervasive reflux and seizures.

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

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

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

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

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

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

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

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

The results are obvious. Daniel can watch TV and laugh; he can be reliably distracted. He has the same 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 always takes the back roads, whereas Amy, a relative newcomer, sticks to the main highways. Daniel noticed. And of course there were Daniel’s words. He never talked directly to me—I was an interloper, and he was watching TV—but he chattered away to everyone else. Of all the gifts I wish for my dear son, for him to speak a few words is the first I would want granted. I love Walker’s Frankenstein walk, and his pulpy hands, which seem dearer for being the flawed things they are. But to hear him speak his own name? To hear him call
Hayley
! 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 the words mean. The language of CFC children who can speak often has a faintly plastic or artificial quality, a less than genuine feel: they mean what they say, but one is sometimes left with the impression that they are using someone else’s words to say it, that their language is more borrowed than self-generated. But at least it is language, proof of an inner life, evidence that they can sense context, that they have desires. I don’t need Walker to say
I love you
to know he does. But if he spoke a word, it would be proof that he had something to say and that he wanted to say it, that there was a point to his saying it. Desire is intention. Intention is hope.

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

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

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

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

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

That’s the real question.