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 2½; 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.