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We hadn't joined the CFC network. I wonder about that now. My wife was in contact with Brenda Conger in 2001. In those days, the CFC network's logo was a pair of angels: There was too much talk of God and not enough information about skin medication for Johanna's tastes. But mainly the sheer pace of looking after Walker kept our attention close to home.
On my trip, even the briefest meeting with another CFC child, felt like the discovery of a new planet. Kolosia Taliauli and her daughter, Vaasi, lived in a tiny apartment in a crime-ridden neighbourhood of Stockton, Calif. Vaasi was 21/2; she had spent 80 per cent of her life in hospital. Kolosia was a single mother with an eight-year-old son when Vaasi was born. She had to give up her job. California (a pro-disability state) now paid her $8.25 an hour to look after her own child. Medicaid covered everything else. Formula was even delivered right to her door.
"Sometimes, with a child with a lot of medical needs," her state-supplied nurse, Laurie Kent, told me, "it's better to be broke."
28 April 04. Our advocate, Margie Niedzwiecki, introduces us to Lisa Benrubi and Minda Latowsky, the guts of the new special-needs team. Lisa's the boss. Minda will be our case worker. Until this program came along, a developmentally delayed child had to become a ward of the state — relinquished to the Children's Aid Society — to qualify for a group home. Under the new program, we would still be Walker's parents. We'd make all the decisions, but his care would be spread around. Minda, my new god, refuses to refer to a group home as "Walker's house." She says, "It's your house too."
The real problem is structural. Until recently, no one — certainly no part of the government-funding apparatus — was willing to admit that a child could be loved and still be too difficult to be cared for by his or her parents. Because until 20 years ago, children this medically complex didn't exist. They didn't survive. High-tech medicine has created a new strain of human beings who require superhuman care. Society has yet to acknowledge this reality.
And Walker is an especially needy example of the new human strain. There are high-quality residential homes, but they typically have only 10 to 12 beds. At $250 a day — 24-hour care, shelter, food, transportation — funding is limited and based on need. The contraptions alone are bank-breakers: Tumbler-form feeder seat, $729; Breeze Lite helmet, $129; veil bed (for safety), $10,000. It took three years to find that money. Meanwhile, I can get a $500,000 mortgage in 20 minutes.
"What I'd really like," Johanna said the other day, "is for them to give us the money, so we could have all the 24-hour care he needs, but at home." I don't agree. I'm not sure a miniature hospital in our house would be an improvement.
It's physically impossible to continue to care properly for Walker at home, but emotionally impossible to have him live anywhere else. Johanna calls this her Walker revelation. "Sometimes it's not a choice between right and wrong. Sometimes it's a choice between bad and slightly less bad. That was a revelation to me — that some things are unfixable." She may be coming around.
Years later, Minda Latowsky told me how it looked to her back then. We were having coffee in the suburbs, on our way back from one of the care-planning meetings we have about Walker.
"Physically," she said, "you could see in your household, you were shadows of yourselves. Here were two people who loved their child, who were trying to function as well as they could, who were working as well, who had another child as well. You think about it in future terms: Should Hayley suffer as well? The emotion was palpable. And the struggle I could see in you and the pain you carried around — the roof was coming in."
She stopped talking. I refilled my coffee. "You weren't people with an imaginary complaint," Minda continued. (I hoped it was true.) "Every family has something. It's just a question of levels, and how much a family can cope with. And how each family responds. And you have to be able to ask for it. Because wanting it and asking for it is a big thing. Because it means you can't do it on your own any more. Who wants to admit you've had a child and can't raise him?"
The first thing Daniel Hess did when he met me was shout and fling his glasses into the living room. It was an understandable reaction; I interrupted breakfast with his grandparents, who were visiting from New York City. This was in Glen Ellyn, a prosperous suburb to the west of Chicago, where Daniel lives with his mother, Amy, his father, Steve, and his two younger sisters, Sarah and Laura.
Daniel was a six-year-old CFC miracle. He could talk. He was in school and could read at grade level, better than most of his classmates. He could even dress himself — he was wearing a very nice pair of green frog boots when I met him, to favour a sore ankle. Metabolically, Daniel was not so lucky: He suffers from ulcers in his intestines, serious allergies and immune problems, pervasive reflux and seizures.
Amy was about to turn 40. She was a ball of purpose with blond hair, and possibly (her mother said) the most organized woman in Chicago. She had grown up in Lake Forest, Ill., and in Houston. Her father was an insurance executive. She had a degree in economics and anthropology from St. Lawrence University. She had graduated in 1990, married in 1999 and had plans to work in the advertising business. She was the definition of high-functioning. Steve was a landlord, with several buildings he had inherited.
Then in 2001, Daniel was born, four weeks early. He couldn't take her breast, but he was Amy's first child — what did she know? He slept three hours a night, aspirating and refluxing all the time. He was diagnosed with Costello's syndrome. The same day, Daniel in hand, Amy ran into a woman she had met doing volunteer work. She looked at Daniel and went white. "I have a friend who has a son who looks just like yours," she said. Amy faxed Daniel's picture to her friend's friend the moment she got home. The woman called right back. "Your son has CFC," she said. Amy was on the phone to Brenda Conger that afternoon.
The diagnosis didn't lift the burden. But the knowledge that her son was the product of a spontaneous genetic mutation, virtually at the moment of conception, "cleaned up the guilt of creating a child who suffers. You know, 'What did I do wrong? Was it because I had a manicure while I was pregnant, and the fumes did it? Was it because I was a skydiver and took a few jumps before I knew I was pregnant, and he suffered from a lack of oxygen?' So the diagnosis was peace."
Or at least as peaceful as a conscientious parent of a handicapped child can feel. "I've had a very, very blessed life," Amy told me. "I've had great parents. Great friends. Great jobs. Great schools. And I did think, 'It was my turn.' "
Amy was a worrier. Fortunately for Daniel, she coped by researching. She quit her job and transformed herself into a full-time medical detective. She enrolled him in an endless schedule of therapies — up to 10 a week, from the time he was one month old until he was 3, mostly paid for under the state's early-action program for children more than 30-per-cent delayed. "He needs every break he can get. I didn't want him not to learn at a crucial stage." There were stretches when Daniel was in some form of therapy 24 hours a day, whether in a feeding chair or asleep. The speech therapists signed for four months before Daniel made eye contact, but they signed anyway. Amy kept detailed, typed records of every medical appointment and medicine he ever had. CFC is full of surprises, but Amy's systematic attention is a model of how it needs to be approached.
The results were obvious. Daniel can watch the TV and laugh; he can be reliably distracted. He has the same knobby knees as my boy, but Daniel can climb into the car with his Dad and — armed with the uncanny spatial sense that lets him do jigsaw puzzles upside down — say, "We go your way, or Mummy's way?" Steve has lived in Glen Ellyn all his life and takes the back roads. No one had noticed the difference before.
And of course there were Daniel's words. Of all the gifts I wish for my dear son, for him to speak a few words is the first I would grant. I love his Frankenstein walk, his pulpy hands, better for the flawed things they are. But to hear him speak his own name? To hear him call Hayley! loud and clear, as opposed to the Hehhh he gets out now and then? To hear him say, Ma, I love you? My heart is banging at the thought. Fuck you, Dada! would be the Gettysburg Address.
And not because of what they mean. Especially in delayed CFC children, language can have a plastic quality, as if stuck on from the outside. I don't need Walker to say, "I love you," to know he does. But if he spoke a word, it would mean he wanted something. Desire is intention. Intention is hope.
When Walker was 1 1/2 years old, my wife and I sat next to one another at the kitchen table and filled out the MacArthur Communicative Development Inventory. It was eight pages long. According to the inventory, Walker understood 115 words: Are you hungry and Open your mouth; kiss and wet; yucky and you and breakfast and moon. Good, but not happy. 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 he actually said nothing. Johanna and Hayley have dreams to this day in which Walker can talk like a trial lawyer. They wake up exalted, filled with excitement. In my mind, we chat non-stop. But in actual life, my son can't speak.
So there were times in the beautifully appointed and deliciously organized Hess house when I couldn't speak either, for envy and sadness. I wanted to get in my car and on a plane and fly straight to Walker. But for better programs, cleverer doctors, more money — so I told myself — but for being born five years too soon, Walker might today be as fortunate as Daniel. What if one of us had stayed home, not worked?
Every parent of a compromised child knows this secret envy, mines its thick seam of guilt. It's no more reasonable to say that one parent has an obligation to stay home than it would be to insist that Amy Hess had an obligation to go to work. My wife and I did everything every doctor and medical report ever suggested; we had the ready advice of Toronto's Hospital for Sick Children and Bloorview MacMillan Centre, two of the top pediatric institutions in the world. But nature was stronger.
Kate Rauen's identification of the CFC gene means, technically, that a fetus could be tested for CFC in utero and aborted. All this pain could be avoided. (The disease is so rare, however, that routine testing is unfeasible.) Amy Hess won't even think about that decision.
"I wouldn't change having Daniel," she insists. "But I wouldn't choose to have more children who suffer." She may adopt another special-needs child, "because at least then you don't have that guilt component, of bringing such a child into the world." She still blames herself for her son. She does not blame the world for the way it treats him.
Daniel, though, is freer. He often approaches strangers on the street. "Hi," he says. "Do you like me?"
That's the real question. The next one ought to be: How much?
Part 2 continued on Chapter 4…