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.
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. Born HIV-positive and suffering from a form of palsy linked to the disease, X — and her fellow residents — were born into what was thought to be an early death sentence.
But advances in HIV-drug treatment over the past 10 years have enabled these children to live longer, bringing the first generation of "AIDS babies" to adolescence and the cusp of adulthood, and a world of unknown, unanticipated challenges.
"We were losing so many children," said Sister Bridget Kiniry, one of the founders of The Incarnation Center.
"There was a period of time when we were having two or three funerals a month," she said. "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."
Caregivers who once spent their time trying to make the brief lives in their custody as pain-free as possible, now must confront the new problems.
"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.'"
The people of ICC and others, including parents and foster parents, find themselves scrambling to make up for missed educations, to prepare people suffering from learning disabilites, and emotional and psychological trauma to lead independent, adult lives, and to cope with all manner of life's complexities that no one thought they would see.
X is the first resident to get that far at ICC, and it's opened a minefield of issues for her custodians.
What do they tell her about sex? What do they tell her date about her illnesses? What kind of rules do they set, and how should they be enforced?
At the Incarnation Children's Center, which has been New York City's only residence exclusively for children born HIV-positive since 1989, they've decided to deal with some of the issues by becoming an extended family for their 18 children, who range in age from 20 months to 16 years.