Camp of Care
09/21/1992 at 01:00 AM EDT
EARLY ON AN OVERCAST MORNING IN THE DILAPIDATED housing projects of the East Bronx, Ramona Rivera and her 8-year-old fraternal twins, Jayson and Javier, hurry out of their little fourth-floor apartment, wary of the drug dealers who hang out in the neighborhood by day and fire their automatic weapons by night. Ramona, 38, and the boys—Javier is pudgy; Jayson, thin—will soon be on a bus leaving their scarred surroundings for a six-day, end-of-summer camp by a lake in the New Jersey woods. More than a vacation from the terror of street violence, the trip is also special because Ramona is HIV positive, as is her frailer son, Jayson. "We may not be around next year for another camp." she says.
Later, the bus arrives, and 52 travelers—including the Riveras—emerge to the cheers of camp staffers dressed in T-shirts and shorts. Calm and sad-eyed, Ramona coaxes the twins out to meet their counselors. Like most of the others—infants as well as adults—Ramona has come here because of the shadow that hangs over her life. "They call it an AIDS camp," she says, gazing at a nurse walking by with a tray of medicines. "But I think of it as an escape from death or from thinking too much about dying."
For the next six days, she and her fellow campers will focus on fun and games, on summer and sunshine, with the help of 50 or so volunteers at the Birch Services Summer Project. While the campers' fears are never far from the surface, they find diversion in fireside sing-alongs and craft classes, in bingo, boating and volleyball. "We're here to give these parents and care-givers a rest and to get them away from the stigma of having HIV," says Phyllis Susser, executive director of the nonprofit Birch Services, which has run this program for the last four years. "Mothers can also deal with their feelings of guilt and shame over giving the virus to their babies."
Everyone has a different story, says Puerto Rican-born Ramona. "The hardest part about having the virus is not my dying but Jayson too," she explains in a quiet moment at the nearby lake, where the boys are canoeing with their cabin group, the Red Ninjas. "And Javier will goon without us." Ramona believes her husband, who was killed in 1978 in a neighborhood shooting, unknowingly infected her through sexual contact. "He'd been seeing another woman, who later died of AIDS, but back then I never thought I could have gotten it," she says. After her husband's death, she began working days as a nurse's aide, studying nights to finish high school, and had an affair with the man who would be the father of her twins (he was HIV negative). In 1987, when the twins were 3, Ramona noticed that Jayson was limping and had swollen knees. To her shock, blood tests showed he was HIV positive and that she was as well. "Nature's accident," she says. "I've told Jayson what he has, but he refuses to accept it. He's angry and frustrated and wants to be like his brother." No one knows why mother-to-child transmission occurs in some cases and not in other's, says pediatric AIDS specialist Dr. Arye Rubinstein of New York's Albeit Einstein College of Medicine. He estimates that about 30 percent of pregnant HIV-infected women in the Bronx give birth to babies with the virus.
By the twins' third day at camp, counselor Dana Henderson, an 18-year-old psychology student from Green Bay, Wis., reports that she and the boys have bonded, though Jayson is still a bit withdrawn. "I'm so lucky," she says. "When they go to sleep, I get to luck them in and kiss them each five times. It makes me feel like a mom." Mark Snorden, 26, a New York international marketing consultant who is HIV infected—as are several other counselors—also plays big brother to the twins. "Being with the kids has helped me face my own situation," Snorden says. "I found out life has to be more than just about me. Being with Jayson and Javier has given me strength."
Except for the marked physical difference due to Jayson's illness, the two boys are textbook twins. Inseparable around camp, they often speak the same words simultaneously. They both love Nintendo, Dr. Seuss, cartoons, nature programs and animals of all kinds. "I like birds, reptiles, insects and fish," Javier says. Jayson adds, "And amphibians, like frogs." The more robust Javier also admits he hasn't decided what he wants to be when he grows up. Jayson dreams of being an astronaut.
That afternoon, after the adults' volleyball game, nine mothers—all of whom appear healthy but are taking various medications to fight AIDS-related infections—sit outside under an awning around a large conference table. "How are you feeling? What's on your minds?" asks one of the two social workers present. By now, camp activities, freedom from child-care duties, and postcard-perfect weather have encouraged the women to talk openly about their plight, often in tearful bursts of honesty. Magdalena, a tall woman of 30, says she believes she became HIV positive either from her ex-husband or from a transfusion during the birth of her noninfected daughter, now 6. "I didn't know I had the virus until I had another baby, my son, who died of AIDS when he was 4 months old," she says. "Now I'm going to pass on and leave my daughter. It's like I'm in a bad dream. It hurts. And I used to be a goody-goody—never slept around or did drugs." Carmen, 29, an HIV-infected mother of three, one of whom also has the virus, adds, "I hear you, honey. I just pray to God that I hang on till my kids are able to take care of themselves."
Ramona admits she has already bought a cemetery plot so as not to inconvenience relatives after her death. Alicia, 30, who is also HIV infected, blurts, "Eight years ago I was diagnosed positive when I was seven months pregnant. My husband gave it to me, and he died of AIDS. Now me and my daughter have it. I was going to kill us both because I didn't want my family to deal with us wasting away. They still freak out when I talk about it. They want to blame somebody, but you can't be blaming people. I hate it when people judge us. I know what I did to my baby." Marta, 32, HIV positive and a mother of a healthy 5-year-old girl, says that until recently she would push her daughter away whenever she came near. "Now I'm going to therapy to learn to hug my kid," she says, sobbing. "Is that crazy?"
That evening, after the campfire embers have dimmed and the Red Ninjas and Little Mermaids are sound asleep, Ramona listens to health tips. "Garlic," says Marta. "Cucumbers and sprouts," says Orlando, 32, a muscular, HIV-infected father of two children, one with the virus and one without. "I've had it for five years, and I'm fine. Not even a cold." Finally, Ramona, who believes she has had the virus for 14 years, rises to leave, smiles and says, "It's OK, eat what you want—we're still alive. Just say your prayers. Buenas noches."