Oasis of Love--for Clients and Staff

The little girl’s grandmother and I are sitting in the enclosed patio office of a small housing compound in Culver City. It’s not a fancy place, just homey--with several modest houses circling a courtyard full of toys.

Outside, with other children, the little girl is playing. She is doing what kids do in the late afternoon, when school is out and the sun is slanting through the trees. She is wobbling along a cement path on a little bike, talking and laughing.

To watch, you would never know that the principal bond these children share is HIV. Nor that AIDS--focus of celebrity-studded fund-raisers and widespread public education campaigns--remains a shameful secret for some.

But that is what the grandmother is admitting as we sit in the office of Caring for Babies With AIDS, the poignantly named, privately operated agency that is home to about 14 infected babies and children, and the source of social, financial and health services for about 500 others. CBA aims to help HIV-affected families stay intact. When children with AIDS are orphaned, abandoned or removed from the home by court order, CBA takes them in--preferably until good foster care can be found, but often for many months, sometimes even years. In five years of operation, the agency has experienced the deaths of only two of 75 residents.

The grandmother is telling me, first, about the dark moment she learned that her only child, a drug-addicted daughter, was ill with AIDS. It was followed by the even worse news about her granddaughter.

“Oh, I wanted to die,” says the grandmother, who had come from New York to visit her daughter in drug rehab. “I felt so hurt.”

She had a severe heart attack. Then, her daughter died. After that, the focus of her life narrowed to two things: her granddaughter and her job of more than 30 years, as an aide in a mental hospital. Her husband, feeling pushed away, gave up and left. In 1994, she retired and moved to California to be closer to family.

“I was interested in nothing and nobody but the baby,” the grandmother says. “I was going to take care of that baby. Everything within me was going to see that this baby pulled through. I was homicidal, suicidal. I decided when she got so sick, I was gonna kill both of us. None of my friends knew she had AIDS. We were alone.”

They live a kind of double life now, but one that is tolerable, thanks to Caring for Babies With AIDS. With the help of her CBA social worker, the grandmother has found an apartment, furniture, clothes, a therapist and figured out how to navigate the health-care maze for her charge, who is now 7. She turns to their CBA social worker for almost every logistic and bureaucratic problem she comes up against.

Astonishingly--to me, at least--the grandmother is still too ashamed to tell friends about her grandchild’s illness. Neighbors think the child has sickle cell anemia.

But Ginny Foat, executive director of CBA, assures me that this attitude is not unusual, particularly in economically stressed minority communities. CBA serves a population that is mostly poor, and mostly black and Latino.

The children are usually unaware of the potential death sentences hanging over their heads. Foat laughs as she tells me about a very sick 6-year-old who one day pointed to a 4-year-old wheeling her IV pole in the yard.

“Oooh, what’s wrong with her?” asked the older child. “Is she sick?”

This month, CBA is launching a drive to raise about $1.6 million for a new building next door. The facility will include a day-care center and respite care for children whose parents are hospitalized.

“It’s not unusual,” Foat says, “for a mom to be lying there [at home], half dead because she knows if she goes into the hospital, the county will take the kids.”

Despite the fears and shame of so many of the families served by CBA, raising money for the agency has been relatively easy. Ditto recruiting volunteers. The feel-good quotient is high in a place like this, where you can’t easily feel bad about your own life when you are surrounded by children who are bedridden with tubes in their stomachs, who play in the yard attached to IV drips and poles, or who look no older than 18 months at the age of 4.

“People say it must be hard working with dying children,” Foat says. “Believe me, it’s not.”

* Robin Abcarian’s column appears Wednesdays and Sundays. Readers may write to her at the Los Angeles Times, Life & Style, Times Mirror Square, Los Angeles, CA 90053.