Welcome to Florida’s West Palm Beach, tony Palm Beach’s grittier neighbor, where one-fifth of the population lives below the poverty line, where the AIDS infection rate is among the highest in the nation and where, after nearly 15 years on the streets, Roxanne Mathis is home again.
Prostituting herself for crack money, Roxanne, now 32, ignored not only her own HIV diagnosis but that of her son, Brian, who tested positive at birth, in 1992. Now, finally, they’re under the same roof again.
“I’ve been clean for over a year now,” she says, laughing, “and it feels wonderful.” Brian’s reaction is a tad more subdued—he has just turned 14 and calls himself “the quiet type”—but he agrees that he’s happy too. Isn’t he angry that his mom was gone so long? Nah, Brian says: “I knew she would be coming back.”
Besides, he wasn’t exactly alone. Meet the undisputed head of this modest three-bedroom apartment and an emblem of the ever-evolving HIV family: Brian’s 54-year-old grandmother, Alice Thompson. Most people call her Miss Alice. She raised Brian while Roxanne, her daughter, was gone. She stayed by him when he was hospitalized at 3 weeks old with PCP pneumonia, when “you couldn’t even see his little body for the tubes,” Miss Alice remembers. She vowed that he wouldn’t die an early death—and, she recalls, “nourished him, gave him all the love I had and some I didn’t think I had.” She nursed him back to health when he was hospitalized again at 12, for a month, with a life-threatening staph infection. She fought his battles with school officials and sought out doctors and counselors and a special summer camp for kids affected by HIV. She kept him out of the foster care system, dreaded by every child whose parents can’t parent.
She’s the one Brian calls Mom.
Miss Alice is not alone. Grandparents or other relatives are raising more than 2.5 million American children—an 86% jump from 1990, according to census data analyzed by the Children’s Defense Fund. Just how many of those scenarios are driven by HIV/AIDS is hard to determine. But if you factor in the Centers for Disease Control’s estimate that nearly 200,000 women have been diagnosed with AIDS from the epidemic’s start through 2004 and then consider that nearly 30% of all those newly infected with HIV in the United States are women and that 75% of those women have children, a sobering picture emerges.
To be sure, the tragedy of the AIDS orphan is hardly a new one. And its impact in America, ever since lifesaving drug combos began to arrive, has been eclipsed by the wrenching news from Africa: Some 18 million children there could be orphaned to AIDS by decade’s end, according to UNICEF, leaving many to their grandparents’ care. Perhaps that’s why the New York Times no longer runs domestic stories like the one from 1994 correctly estimating that up to 125,000 U.S. children would lose their mothers to AIDS by the year 2000 or the one telling of a booming New Jersey support group for such children and their grandparents that has since disbanded. But that doesn’t mean that the phenomenon has died here in the U.S., especially, the data suggest, among African-American families, with their strong maternal hierarchy.
In some way, these households reflect a new era in the U.S., where HIV positive women—often poor and beset by other challenges, including depression and drug addiction—adhere to their HIV regimens just enough to avert the swift AIDS deaths of the past. Many grandparents have raised HIV positive grandchildren well into their teen years, reflecting not just the success of modern HIV drugs but the fact that these children were born just before it was discovered that giving HIV drugs to both delivering mothers and their newborns could prevent mother-to-child HIV transmission in the first place. But only now are these homes beginning to get the full financial, legal and emotional support they desperately need and deserve. Indeed, says Donna Butts, executive director of Generations United, a national group that advocates for grandparent caregivers, such elders save the U.S. billions of dollars a year in foster care expenses.
The Second Time Around
Sounding a national call for such households, POZ heard from retired, married grandmas like Newark’s stoic, flinty Geneva Morrison, 67, who raised her HIV positive granddaughter, Shanti, now 22, after her mother, Angela, died of AIDS in 1987. We heard from single working grandmas like Chicago’s Karen, 52, a Native American raising her two HIV negative teenage granddaughters after their mother died of AIDS in 2000. (Their mother refused to take HIV meds, says Karen, who, like some others interviewed for this story, asked that we not use her full name.)
We heard from the irrepressible divorcée Shirley Black (“just like Shirley Temple Black,” she giggles), 57, of Riviera Beach, Florida, who logged many miles as a flight attendant in order to raise her HIV positive 19-year-old niece, Star, in middle-class comfort after Star’s mother (Shirley’s younger sister, Sonya) died of AIDS in 1993. An accomplished violinist and aspiring pediatrician, Star has just finished her freshman year at a private college in Florida.
But we also heard from grandmothers who have raised grandchildren while their HIV positive daughters tangled with some combination of drug addiction, incarceration and mental illness that left them unable or unwilling to parent their own children. Grandmas like Miss Alice or like North Carolina’s exhausted, exasperated Mary (who asked that her real name not be used because HIV is “a hush-hush” in her rural town), 74, who is raising two teenage granddaughters—the elder HIV positive but both full of “anger, anger, anger, anger,” she says. Like Roxanne, Mary’s daughter is also in drug recovery and visits Mary and her daughters regularly.
AIDS increases the burden on these families, which must confront not only the grief of deceased or troubled children and a disease that can be difficult to treat in young people but also such issues as shame, stigma, secrecy and disclosure. Deborah Langosch, PhD,LCSW, a New York City social worker who has worked closely with women raising grandchildren whose parents have died of AIDS, says the disease “complicated the bereavement process for them. They felt that they couldn’t let people know and were very isolated in their grief. It caused more depression and anxiety in them [than in peers whose children had been lost to cancer] and sometimes less ability to understand the value in talking about the loss with the grandchildren. They kept a stiff upper lip and felt that if they talked about it, they would open the floodgates and not be able to raise their grandkids the way they wanted to.”
Strength in Older Numbers
Langosch and others who have worked with women raising grandchildren orphaned by AIDS will tell you this: They are remarkably strong, resourceful women, equipped with seemingly limitless reserves of love and excellent coping skills. Weakness isn’t an option, left as they are to raise grandchildren at a time when their own physical stamina is often declining. Says Aunt Shirley of raising Star,
“It’s not like I had a choice. I don’t know anybody that would have taken care of my baby like I did.”
What’s more, only a few states provide households like theirs with special financial support, whereas nonrelated foster parents receive hundreds of federal dollars a month. On top of that, grandparents who lack legal custody of their grandchildren have a limited say in their upbringing; and even when grandparents have a shot at custody, obtaining it is daunting without outside support.
With all these challenges, how do these women manage to cope? Often, with a profound religious faith. Says Langosch, “These grandmothers would come in and tell you stories so tragic and traumatic, and many would say that if they didn’t believe in God they would have given up a long time ago.”
Newark’s Geneva Morrison says, “I’ve been in support groups, and I go to church and believe in God. I also believe there’s nothing wrong with crying, and I’ve done my share of that. Cry, just as long as you pull yourself up and get back to living.”
And she has another coping tool: shopping binges at the nearby Salvation Army thrift store. “Whenever I go there, I run into all the other shopping addicts,” she laughs.
Hers is a harmless outlet. But many grandmother caregivers cope by drinking. “One said to me, ‘It’s just me and my bottle at night. That’s how I put myself to sleep.’ It’s a medication against depression and anxiety,” says Langosch. “We need to give them support groups and counseling and whatever else they need to find healthier ways of coping,” she adds.
Langosch also says that it is not unusual for such grandmothers to have their own history of drug use. That was the case with Miss Alice, whose crack habit in earlier years played a role in her decision to send young Roxanne to live with relatives. “I did what I thought was right at the time,” says Miss Alice, who, in a sad irony, kicked her habit just as a teenage Roxanne was beginning her own.
Such tales speak to the darker, sadder side of these Teflon grandmas. Their grandmotherly love can keep them from directing inner stores of anger and grief directly at their grandchildren. Those with HIV positive grandchildren, especially, have learned how to channel that anger outward toward an AIDS-phobic society.
“They become the best advocates,” says Langosch. “They’re out there; they talk about it; they break through barriers.”
Aunt Shirley proudly recalls how she stood up to a high school band teacher who knew that Star was HIV positive and didn’t want her going with the band on a trip to perform in New York City because he feared taking responsibility if Star got sick. “I had a meeting with the principal and called him out on it,” Aunt Shirley says, the old fight rising up in her usually sweet voice. Star made the trip—with one of the top pediatric AIDS doctors in New York City on call for her.
Miss Alice, Morrison, Aunt Shirley and Mary have all attended, or even founded, support groups for “AIDS grandmas” like themselves. They have also taken their grandkids numerous times to special camps for families affected by AIDS, such as Minnesota’s Camp Heartland or Florida’s Friends-Together. Despite scant personal resources, they get their grandchildren and sometimes themselves the support they need.
Cursed or Blessed?
But just because they don’t direct their frustrations at their grandkids doesn’t mean those resentments and regrets don’t persist. Some grandparents handle them better than others. “You ask yourself, ‘Why is this happening to me?’ ” says Morrison. “But then you realize that if it’s happened to someone else, why shouldn’t it happen to you? You don’t pick and choose what’s going to happen to you. You deal with it.” Aunt Shirley calls her fate “a blessing,” adding, “I feel like my life would be so empty [without Star].”
Yet Mary and Karen are struggling with teenage girls who are acting out in all sorts of ways, and Mary is feeling the strain. “As you get older,” she says, “you don’t have the patience to deal with young people—especially the ones that I know of with HIV. They’re angry. They feel like they’ve missed out on a lot, being disconnected from their parents, and it comes out.”
Among the HIV positive grandchildren mentioned here, only Brian and Star spoke to POZ. Neither seemed gripped by the same outward anger that Mary described in her granddaughter. But they both acknowledged their tremendous anxiety about disclosing their HIV status among their peers. Asked what the hardest thing is about having HIV, Brian says, “Not being able to tell anybody or not having a lot of friends you can trust” and confided that he liked Friends-Together because “I got friends there I can share with.” Star, who has told few friends of her HIV status, related a hilarious story. When she was out sick in high school due to AIDS complications, her schoolmates, thinking that she suffered from sickle-cell anemia, held a fundraiser for the disease in her honor.
Then there’s the issue of getting the kids to pop their HIV pills, which all the grandkids avoid to varying degrees. To hear Mary tell it, her granddaughter seems the most resistant: “She refuses to take them,” she says, distraught. “Her attitude the past three years is that she would just rather die.” As for Brian, now that he’s taking an antidepressant and seeing a counselor twice a week, he seems to be taking his meds more easily, says Miss Alice. Before, she says, he refused them, saying “I’m just going to die anyway.”
Had he really said that? “When people get depressed,” Brian answers, “they say stuff that comes off their heads.” Being told that if he took his meds regularly, he would likely live a normal life span, he said he felt a little better. He wants to go to college, he says, and be a lawyer and become “the richest boy on the planet.” Oh, and be a hip-hop artist too—“like Lil’ Bow Wow.”
A more supportive climate may await families like these. A bill introduced in
2004 by senators Hillary Rodham Clinton (D-New York) and Olympia Snowe (R-Maine) would ensure that grandparent caregivers get financial assistance comparable to that received by foster parents. Another current congressional proposal would lower from 60 to 55 the age at which grandparent caregivers could receive certain support services—an acknowledgment that such caregivers are often far younger than 60. The LEGACY Act, passed in 2003, may create more grandkid-friendly senior housing, such as a model residential program expressly for low-income grandparents raising grandchildren that opened recently in the Bronx. And in many localities, child-welfare agencies are easing the bureaucracy that stymies grandparents trying to get custody of their grandchildren, realizing that children may be better off living with loving kin than strangers, even if Grandma’s apartment doesn’t fit every legal specification.
Meanwhile, for households like Aunt Shirley’s and Karen’s, life goes on. “I miss my sister Sonya a lot,” says Aunt Shirley, “but I always tell [Star] stories about her, and I always introduce [Star] to friends by saying, ‘This is Sonya’s baby—and I’m very proud of her.’ ”
Prodigal daughters and mothers are typically welcomed back into households like Miss Alice’s, where forgiveness appears to trump bitterness. “It’s wonderful,” says Miss Alice of having Roxanne back after all these years. “Like a child that’s been in another country and has finally come home.” Miss Alice trusts that Roxanne has kicked crack for good this time—“she’s more mature; her attitude has changed; and she’s not around any of her [bad influence] friends”—adding that she’s not angry about being left to raise Brian for 14 years. “I was hurting when Roxanne was in that [addicted] state,” she says, “but I never gave up on her.”
As for Roxanne, she knows she has a lot of catching up to do with both Miss Alice and Brian. For now, she’s happy just being home with them to watch TV—reruns of Little House on the Prairie, Miss Alice’s favorite show, or Family Guy, which cracks Brian up. Roxanne knows that someday she’ll have to explain to him where she was all those years. “How do you tell your child that Mommy was prostituting herself for money and drugs?” she asks. “That’s not easy.”
It may not be as hard as she thinks. Asked what he’d most like to tell his mother, Brian replies, “Even though you think I never loved you, I do.” And to his grandmother? “I’m thankful for what you did for me, and I love you for it, and I’ll never change.”
Miss Alice tears up when she hears the message. She has her own message for grandmothers who find themselves in her situation: “If you have a daughter or son who’s struggling and they have a kid, that kid is a part of you. You take that kid, and you love him because once that kid finds out that he’s loved, that’s going to give him a reason to live.”