Foster Children with the AIDS Virus

By RICHARD CONNIFF

School's out, and the first grade exits for the day in double file, with six- year-old Tina somewhere in the middle. Slack-armed, she drifts sideways toward her foster mother across the rushing current of her classmates. Her eyes are scrunched up woefully in the universal expression of a sick child seeking consolation from a parent. Her ear aches, she reports. Also, her feet hurt.

"Ooh, you're in bad shape," Bonnie says, taking the child to her side. "We're going to have to sign you up for Social Security." But her lightness has an edge to it: this may be the day it gets serious.

"That child is getting fat as a butterball," Bonnie had declared happily ; that very morning at a meeting of other families whose foster children carry HIV, the human immunodeficiency virus. Tina's doctors have lately totted up her symptoms and moved her into the category called AIDS-related complex, or ARC. Bonnie takes this as a hopeful sign: the child has a whole stage to go before full-blown AIDS. Tina's birth mother, a drug addict with AIDS, is less optimistic. She phoned not long ago and remarked, "Tina's going to die, isn't she?"

For today, Bonnie prescribes a Nutty Buddy ice cream cone on the walk home, then a few drops of Sweet Oil for the affected ear. She makes an appointment at the clinic for the morning. Then she sets Tina up with a thermometer in her mouth and her homework in front of her. "Come on now," she says, urging a pencil on the child. "You're not that sick."

"With these children, you have to push a little harder," a woman named Helen is saying in a fervent voice at that morning's session of foster families. Connecticut has a policy against letting HIV-positive children languish in hospitals or boarding institutions. What it has instead are these 18 foster families, a kind of loose-knit secret society dedicated to giving the children normal lives. Some of them got started as foster parents because they knew the birth mother, or because they came to know the children in their jobs as nurses or social workers. They got together for the first time as a group with the help of Rachel Rossow, who works for the state's department of children and youth services in the oxymoronic capacity of consultant and saint. Except at this monthly meeting, in one of their homes, they don't talk about what they do. They use pseudonyms and avoid the word AIDS, especially around the children. They don't want neighbors shouting epithets at them. Some of them have not told their families because they want to be welcomed at Christmas dinner, or because they're afraid a daughter-in-law will stop bringing the grandchildren by. "They say we have nothing to fear but fear," says one. "But that's enough."

The children help by acting normal. At the moment, a dozen of them are circulating around the house. They stump in and out of the meeting lugging bottles of apple juice, flinging toys, pulling hair. Amid the routine toddler pandemonium, Helen is talking about the 21-month-old child on her lap. "All of us have a season," she says. "With Denise, we know we'll only have a season. But we make the most of what we have today. You just let the child blossom into your life. Let the joy come out." The doctors said Denise would die of AIDS by Christmas last year, but she has come out of a coma twice. "When they start to get sick, they may just want to lie down," Helen says. She is a 41-year-old black woman, a matriarchal blend of sweetness and strength. "You have to say, 'Let's do patty-cake,' 'Let's sing,' 'Let's kiss on each other a little while.' Let's do all those mushy things that prolong the child's life."

Denise has stick limbs now, and the spaces between her ribs are like furrows in a plowed field. Two tubes run from her nostrils down the back of her neck to a portable oxygen tank. She wakes up three to six times a night, and most nights Helen takes her into the bed she shares with her husband. "She's dwelling in the love," Helen says. "She's not going anywhere as long as she feels the love."

The other foster parents look to Denise, who is the sickest child, and Tina, who is the oldest, and see possible futures for their children. A troubling prospect, either way, and this is the remarkable thing: they risk loving other people's children in the foreknowledge that they may see them die.

"I know what I'm asking them to go through," says Rossow, who is mother to 16 adopted children, many of them severely handicapped, plus three of her own. Apart from her more formal duties as a consultant, she serves the foster families as a sort of group mother and their public stand-in. "And yet I also know that the only reason it's going to hurt so much when the child dies is because they loved him so much when he was alive." For this privilege, the state pays the foster families a monthly stipend of $1,040 a child.

All of them are suckers for children. Their decorating tends to rainbows, balloons and sentimental posters -- A BABY IS GOD'S WAY OF SAYING THE WORLD SHOULD GO ON. (No irony intended there.) They keep a diary for each child: "He can go from the living room to the kitchen in ten seconds at a crawl . . . Eating paper is his favorite pastime."

They seem like normal families, with the sweet chaos of child rearing merely complicated by secrecy and the endless visits to doctors, social workers and birth mothers. Some foster families end up taking in the birth mothers too, when they become too weak to care for themselves; some remain ambivalent. "I always felt sympathy for her, until the night they put him in intensive care," says the foster mother of an 18-month-old boy with ARC. % "They told me that if his breathing got any worse they'd put him on a respirator, and at that moment I hated her."

There is one other remarkable thing about these families. By 18 months, children normally lose the antibodies acquired from their mothers, and about half of them become HIV-negative. "I was so happy I could've gone and shouted on the rooftops," says one mother, whose child tested negative. "But you can't." The practice, when children turn out healthy, is to move them away from the AIDS foster families into permanent homes, making room for more AIDS babies. Thus what the foster parents risk is loving the children and having to give them away, or keeping them to love through a slow death.

The families tend not to think about these possibilities, except at night, in bed. They seek comfort in aphorisms: "Does it make sense to avoid loving someone now because you might lose him later on? Do you stop going to the beach because summer's going to end?" They try to focus on what they have now: "He's a joy. It's wonderful having him here. This is going to be the best Christmas."

A few weeks later, at Helen's house, the mushy things no longer suffice. The doctors have prescribed morphine for Denise's pain, and Helen has begun to sing, "Jesus loves me! This I know," as she rocks the child. "It's O.K. to go," she whispers. "These arms will hold you again." At a hospital soon after, with Helen and her husband and the birth mother all cradling one another and the child, Denise heeds Helen's sweet voice and dies.