Crutches could not stop "Lady X" from swaying to the grooves of the late Aaliyah.
"Rock the boat, rock the boat. Stroke it for me, stroke it for me," the 14-year-old crooned as she cranked up the volume of New York radio station WKTU and bobbed her head and crutches almost hypnotically.
"X" can bring an entire room to a standstill. Some days her blue eyes fume and weep and seem way too hardened for a girl so young.
However, on this day, X's eyes glowed. It was only 10:30 on a Saturday morning, but she was already looking forward to the evening. Asking repeatedly, "How do I look?" she urged her nursing aides to help her apply her lipstick.
"My boyfriend is coming to visit me," she smiled, brushing her caramel brown hair to the side. "He's my baby, and I love him."
X continued to sing "Rock the Boat" — loudly and slightly off-key — but her fellow residents in The Incarnation Children's Center, a Manhattan-based residence exclusively for children born HIV-positive, didn't wince. They were used to her singing and primping.
X is a pioneer at ICC. She is the first resident to start dating, giving caregivers at ICC an issue they once never thought they would have to confront. Born HIV-positive and suffering from a form of palsy linked to the disease, X — and her fellow residents at ICC — were born into what was thought to be an early death sentence.
However, advances in HIV-drug treatment over the past 10 years have enabled these children to live longer. Caregivers who once prepared for funerals must confront new and unanticipated problems as children approach their teens and adulthood — such as dating, helping them cope with their disease while encouraging them to live as normal as life as possible, and emotional, psychiatric trauma, behavioral and learning disabilities associated with their condition.
According to the Centers for Disease Control and Prevention, in the early 1990s, approximately 1,000 to 2,000 infants were born with HIV each year. Between 1992 and 1998, perinatal HIV cases dropped 75 percent and the numbers have continued to decline.
"We were losing so many children," said Sr. Bridget Kiniry, one of the founders of The Incarnation Children's Center. "There was a period of time when we were having two or three funerals a month. We really prepared for funerals. … Then when the protease inhibitors became available to the children, that changed everything radically. Children that you cared for on a daily basis, where you did not know whether they even had a future, now they had a future.
"The average age jumped from about 2 to 6 years old," Kiniry continued. "[But] you had children now manifesting other conditions that either weren't known or weren't addressed or just manifested. There was a certain amount of scrambling to meet these problems. In this field of [HIV] pediatric care, we were always in uncharted waters. There were never any precedents to say, "This works. This doesn't work.'"