Tending Spirits Wounded by AIDS

“How do you explain to a 10-year-old that her sudden forgetfulness is the beginning of dementia caused by AIDS? That she got the disease from a blood transfusion? That none of this is her fault, but no, she probably will not get better . . . .”

Barry Horton’s sad, rhetorical questions hang in the air of the one-room Hollywood office where he runs Tuesday’s Child, a not-for-profit group he started two years ago to assist families of children with AIDS.

He has just finished talking with the girl’s mother, who doesn’t know how to answer the persistent questions. Though he’s not a trained counselor, he says, parents of these children need as much emotional support as the children themselves. And when they have no one else, they often call him. “It comes with the territory.”

The territory seems to grow every day. At his first Christmas party for children with HIV, only 17 people showed up. This year, 300 jammed a church gym in Hollywood for his holiday bash and 190 local families received gift baskets filled with baby basics and such unexpected delights as handmade quilts.

The original goal of Tuesday’s Child--to provide such necessities as diapers, wipes, strollers and cribs--has expanded. Now, when possible, the group pays rent and utility bills to families who have little or nothing left.

“These babies can go through 60 diapers a day because of diarrhea that occurs with AIDS; they need expensive supplemental formula and all sorts of special things as they get sicker. Parents can’t afford all that plus their usual monthly bills,” he says.

Horton, a former actor, started Tuesday’s Child after working at an agency that assists adults who are HIV positive. “I began getting calls from parents of babies with HIV, and I realized their needs are totally different.”

His fledgling organization, supported totally by donations, barely meets its clients’ needs, he says. Last week, the bank account was almost empty when an anonymous donation made it possible to pay next month’s rent.

When money becomes scarce, Horton takes “only exactly what I need to live; the rest of my salary we put in the bank. Fortunately, I know how to live very cheaply,” he laughs. (He lives in a rented room, drives a battered old Suzuki, and draws about $30,000 a year as director of Tuesday’s Child.)

As the pediatric HIV population increases--388 infants and children with HIV were reported in Los Angeles County as of November--Horton’s list of “necessities” grows, too.

His caseload has jumped from 70 to 160 children this year, ages ranging from infants through preteens. All are referred through social workers from the Los Angeles Pediatric AIDS Network, who work in L.A.-area pediatric wards.

Marcy Kaplan, director of the Pediatric AIDS Network, says Tuesday’s Child is essential and unique--”the only place parents can turn for help with the basic, concrete everyday needs of their sick children.”

Ironically, it’s easier for these parents to get medical care than to get help with rent, food or transportation to and from the doctor, Kaplan says. Medical care is provided by a state-funded program, she explains.

Horton has managed to obtain for his families everything from baby food and an in-home hospital bed (complete with donated linens), to cremations and funerals.

“I’ve buried 12 children just since July of this year,” he sighs. Parents who’ve left their jobs to spend full-time with dying children have no money for the final rites. “It is the last thing they can do for the child they loved so much and nursed so long.”

He recently made arrangements with two firms who will provide cremations and burials at cost.

And then there are the special requests: “One of the great things we just did was a baptism,” he says. “The child is about 3, but she’s like an infant because she’s so sick. The doctors finally advised her mother, who is Catholic, to sign a Do Not Resuscitate order. She wanted the child baptized.”

But the local parish priest and others wouldn’t do it. The mother called Tuesday’s Child and Allison Arngrim--Horton’s right-hand woman and only full-time employee--found an Episcopalian minister to perform the rite. “The child is still alive--in fact, she seems to have made a remarkable improvement--she’s even growing hair,” Horton says. “We’re her godparents now.”

A smiling brunette in boots and blue denim strides into the office, blows a kiss at Horton and relaxes in the battered chair beside his desk.

Groomed like a fashion model, with big earrings, bright lipstick and hair slicked into a chignon, she adds a festive note to the otherwise drab beige decor. No, she couldn’t make it to the Tuesday’s Child Christmas party with her daughter, she tells Horton, because her girl has been in and out of Cedars-Sinai hospital for weeks. She has had to quit her job to be with her daughter. She extracts a telephone bill from her satchel.

“How much to keep them from turning off your phone?” he asks.

“Forty dollars,” she says.

He writes the check while she talks: Her 12-year-old, Debbie, who contracted AIDS from a blood transfusion, is suddenly declining, she says.

“The doctors are baffled. She keeps food down for two or three days, then vomits it up and it’s, like, all there. Every little pea and piece of chicken. Nothing is the least bit digested. They thought she might have a stomach blockage, but they tested and she doesn’t. They say they’ve never seen anything like this. They don’t know what to do. I told them, ‘If you don’t know, who does. . .’ ”

The woman leaves, promising to repay as soon as she gets another job. Of course repayment isn’t expected, Horton says when she’s gone. But his clients “are not takers. They may be low-income, some may have little formal education, but they all have dignity and honor. If I offer extra supplies to tide them over, or a bit more money than they think they absolutely need, they will always refuse. They tell me to save it for someone who needs it more.”

Horton’s admiration is more than reciprocated.

“We would never have made it without him,” Eileen O’ Brien smiles. The widow, 48, says her daughter and 5-month-old grandson moved in with her after they tested HIV-positive. The baby died July 29, after 18 months of agonizing illness. Now her daughter is very ill and “doesn’t want to live without her baby,” O’Brien says.

Through it all, Horton has “been there,” O’Brien says. “He paid for necessities we couldn’t afford. When the baby was dying and my daughter was so distraught, I could not go to work. Barry paid our rent and utilities that month--and for the funeral.”

And Horton still cares, still calls, still sent a Christmas basket.

“I know what it means for a mother to lose her baby, for a grandmother to watch her family disintegrate,” Horton says. “I get criticized for paying funeral bills; some people want me to use resources only on living babies. I disagree. Tuesday’s Child is about the dignity of the human spirit; we do what is needed to help preserve that dignity.”