Life After Death
updated 07/12/1993 AT 01:00 AM EDT
•originally published 07/12/1993 AT 01:00 AM EDT
In its second decade, the disease has found no shortage of lives to ruin in the U.S. (Since the late 1970s, AIDS has claimed 182,275 lives; 107,045 people currently have the disease.) Once confined primarily to men in high-risk groups, AIDS is now spreading fastest among women of childbearing age. (In New York City AIDS is the No. 1 killer of women between 15 and 44.) Many of those women have children who will be left parentless. "In seven short years we will have 85,000 orphans because of AIDS, "says Sandy Scott, the director of Tanya's Children, a Los Angeles-based organization that tries to find adoptive families for children soon to be orphaned by the disease. To avoid having their children shuffled between foster homes or housed in institutions, a growing number of women are using their last months to plan something better. Here are the stories of five who were forced to look beyond their own families for homes, and who, by necessity, found very different solutions.
A Chicago mom and her son brace for the end
In 1988, after one of her best friends died of AIDS, Ida Greathouse watched in dismay as her friend's orphaned son was shuffled between four foster homes in seven months. Greathouse, who had been found HIV positive four years earlier, says she "made a promise to myself that my son would not suffer that pain and injustice." Says Greathouse: "Women should be able to make the final decision about where their children go."
Now 40, Greathouse had discovered her illness a decade ago when her boy, Silvano, 10, was an infant. "I felt like a death sentence had been handed down to me," says the Peru, Ill., native who, because of her IV drug use and multiple sex partners, had been a high-risk candidate for AIDS. "At that time women were only living six months to a year after the diagnosis."
As her son grew older and her health remained stable, Greathouse gradually became active in AIDS causes in Chicago and, when he was old enough to understand, told Silvano about her illness. "I cried a lot. I thought my mother was going to die," he says. "But she told me she was going to live as long as she could, so I knew we could still do stuff together."
One of the things they did was look for a permanent guardian for Silvano. His natural father is thought to have died of AIDS in 1984, and Greathouse's current husband also suffers from AIDS and has been living in a residential care facility since March 1992. Her family, from whom she has been estranged since her teens, was willing to adopt Silvano, but Greathouse didn't feel he'd adapt well to their conventional lifestyle. "They wanted to change Silvano's name to Americanize him," she says.
Silvano's guardian angels came in the form of Robert "Rock" Simcina and Paul Gutierrez, a gay couple whom Greathouse and her son met three years ago through a volunteer program that delivers meals to AIDS patients. The four became fast friends, and, as Greathouse's health worsened—for the past six months she has suffered from anemia and neuropathy, a disabling nerve disorder—Paul and Rock began spending more time with the boy. "It stuck in my mind that there were things like biking and tennis that his mother couldn't do with him," says Rock.
Recognizing the growing bond between her son and Paul, 32, and Rock, 33, Greathouse decided to ask the men to care for Silvano after she died. "I was thrilled," says Paul. Notes Rock: "He was the child I'd always hoped for."
Greathouse says she doesn't worry that Paul and Rock will influence Silvano's sexuality—"I know he's a heterosexual." She has bigger concerns. If she dies before the governor of Illinois signs legislation allowing parents to establish standby guardianship, she fears her family will contest her will. She is also trying to prepare Silvano for her death by discussing with him which oilier possessions he'd like to keep and what will become of her body. She would like her ashes to be spread over Lake Michigan; Silvano wants to keep them in an urn. "We're still talking that one out." she says.
Too ill to care for her son, an L.A. mother settles for Sunday visits
Two-year-old James Spindola is'nt quite sure what to make of his mother. When he visits her each Sunday at Rue's House, a residential shelter for HIV-positive mothers and their children in L.A., he approaches cautiously. "Hey, Twinkle Toes," she squeals, reaching out to hug him. But James is reticent, and his foster mother, Vera Lee, has to nudge him toward his mom. "At first I was jealous of the bond between Vera and James and how attached he is to her," admits Jennifer Spindola, 26. "But Vera understood. She said I would always be his mother."
It is Vera, though, who will raise James. Plagued by frequent attacks of AIDS-related asthma and pneumonia. Jennifer—who believes she contracted the disease from James's father, an IV drug user—has been too ill to care for James, and her doctors aren't optimistic about how much longer she will live. "It does hurt, and it is scary that I might not be here for his next birthday or Christmas," she says. "But when I can't fight this disease anymore, I will be able to let go because I know James is taken care of."
That wasn't always the case. When Jennifer's health began to decline shortly after James was born, the infant. was bounced from foster home to foster home. James's father, who left Jennifer when she became pregnant, didn't want anything to do with him. And Jennifer didn't want James raised by her parents because of her own unhappy childhood. Afraid for his future, she contacted Tanya's Children. The foundation workers introduced her to Vera, 45, a nurse's aide at an L.A. AIDS center, who had been looking for a child to adopt. "I am getting older, and it's hard to find the right man these days," she says.
When Vera, a single mother, first met Jennifer last October, she brought a photograph of her daughter, Kia, 24, a college junior. She promised Jennifer that James too would attend private schools and college. "She had done such a good job raising her own child." says Jennifer. ""I thought I would give her a try."
The next day. Vera began the guardianship paperwork, a process that should be completed later this month. In the meantime, James is making himself at home in Vera's L.A. house, where he has lived since December. "He seems to have adjusted well," says Vera. "He kisses and hugs me a lot. He always wakes up smiling.
For Jennifer, however, the adjustment has been much tougher. Clutching a large stuffed toy to her chest, she recalls waking up at Rue's House thinking about her son sleeping happily in another woman's home. "Some nights when I wish I was holding James. I hold this bunny rabbit for comfort," she says sadly. "But I know this is the best decision for both of us."
Jarred by her recent diagnosis, a mother of three starts her search
In April, Mary Cross was called to her eldest son's West Hollywood, Calif., school where the second grader was being reprimanded. Not only had Robby bitten a classmate, reported the principal, but he had said some mean things about his mother. "Robby told me a really bad lie about you," the principal reported. "He said you have HIV and that when you were young you used to do drugs in your arm."
"I said, 'All of that is true,' " says Cross, 43. "Then the principal whirled around and said to Robby, 'Your mother has HIV. You can't go around biting people; you could give it to them.' "
Outraged, Cross says, she retorted, "He doesn't have it, I do!"
Now 7, Robby has had a turbulent past and, along with his brothers, twins Keith and Dennis, 6, faces an uncertain future. Cross was found to be HIV positive a year ago and in January suffered an incapacitating bout of shingles, a viral disease sometimes associated with HIV. That episode scared her enough to begin looking for a home for her three sons. "What I am going through is hell," she says.
Cross admits to years of heroin addiction and claims not to know which men in her past fathered her children. She is estranged from her family—including brother Randy Cross, a former San Francisco 49ers offensive lineman turned CBS sports commentator—over their disapproval of her lifestyle. She is uncertain how she got AIDS. "No one can tell me," she says. "I either got it sexually or through intravenous drug use."
A good day, says Cross, who now takes AZT and an antibiotic, "is not being in bed all day." But her best day will be when she finds someone she trusts to adopt her children. While she hopes the adoptive parents would send the boys to "nice schools," her first priority is keeping the three, all of whom have tested negative for HIV, together. Robby is healthy, but Keith is learning-disabled, and Dennis, who has cerebral palsy, still wears diapers. "Keith is an overwhelming life force," Cross says protectively. "Dennis has a sweet disposition, and Robby is very bright."
To find a home for her boys, Cross too has been working with Tanya's Children. Last May a caseworker at the foundation told Cross that a family in New York State was interested in adopting the boys. But her health has temporarily stabilized, and Cross has been procrastinating. "I don't know how to mentally prepare for what I have to do," she says.
Although she has explained her illness to her children, only Robby seems to grasp its severity. He is now struggling to brace himself emotionally. "I found out that I am a really brave kid," says the 7-year-old proudly. "Because when I took a blood test for HIV, I didn't cry."
A Maryland mother and daughter move in with a foster family
"There will come a point when I'll want to discontinue medications," says Catherine Williams, 37. who was found to have AIDS last year. "I will not let them put tubes in me, and I don't want to suffer." When that time comes, Williams will know that her daughter, Elizabeth, 4, who is HIV positive;, will he cared for. After a prolonged search for the right foster home, Williams believes she has found it, in a while clapboard farmhouse amid the rolling green fields of suburban Maryland.
There, Bill and Paulette F. (who asked that their last name not be used), live with their three children, one of them a 3-year-old girl with AIDS whom they adopted last year. Williams and her daughter moved in two months ago.
Williams, a former caseworker with the Maryland Department of Social Services, believes she contracted AIDS from a former lover who died of the disease. She began looking for a foster home for Elizabeth shortly after they were both found to be HIV positive in early 1991. When she asked social workers at Johns Hopkins Hospital, where she and Elizabeth were being treated, about a foster home, they were at a loss. "That's when I got my first panicky twinges," she says. "Since then it seems like I've made 50,000 telephone calls. I'm a professional social worker and it's taken me two years. What happens to the average person?"
Williams admits that finding a home for her daughter might have been easier it she had relented on her insistence to meet the adoptive parents, something most adoption agencies do not permit. She also ruled out placing Elizabeth with the child's father, who is dying of cancer and from whom Williams has been separated since shortly after Elizabeth's birth. Williams's elderly parents are also too ill to care for the girl.
Last fall Williams met Bill, 50, and Paulette, 39, through a Baltimore church. The couple had served as foster parents to numerous HIV-positive children in their native New Jersey. When Bill, a computer technician, was transferred to Maryland in 1991, they began looking for an AIDS family to live with them. "I thought if the offer came, if the family were interested in taking us, I wouldn't dawdle around," says Williams. "I've never had any misgivings about Bill and Paulette."
Elizabeth, who has suffered from chronic rashes and ear infections but who has not developed full-blown AIDS, understands that her mother is sick. She has slowly built a bond with Paulette and Bill. For Williams, who has been in and out of the hospital several times this spring, learning to let go has been both a trial and a relief. "I feel bad about leaving her. As much as I love her, I won't be there for her," she says. "Everyone calls for their mom when they're sick. She won't have that. But I know that Paulette and Bill will keep my memory alive for her."
The solution for a Florida mother: separating her two children
When Sophie Newman of Pompano Beach, Fla., was seven months pregnant with her second child, she complained to her obstetrician about a while fungus that had developed in her mouth. The doctor diagnosed thrush, a bacterial infection commonly associated with AIDS, and urged Newman to be tested. A week later she learned that she was HIV positive.
For Newman, 41, discovering her HIV status was the beginning of a devastating series of events. Unsure how long she had been infected (she had been sexually involved with an IV drug user years earlier and received a blood transfusion after a car accident in 1980), she decided to have her daughter, Lauren, then 6, tested. Lauren, too, proved to be HIV positive. "You can't explain the feeling," says Newman of her reaction.
The only good news came when her son Zachary was born 10 weeks later. Although he tested HIV positive at birth, he converted to HIV negative after 18 months when his own antibodies replaced his mother's. Happy with the knowledge that her son, now 3, was healthy, Newman began the unsettling task of finding adoptive families for him and his sister, now 9. Their fathers were out of the picture; she stopped seeing Lauren's years ago. As for Zachary's father, she says, "I have no idea where he is or what he's doing. These are my kids. These are my babies."
Newman's parents, Herbert, 65, a retired trucker, and Bernice, 61, a toll supervisor for the Florida Turnpike, agreed to take Lauren but told Sophie that the prospect of caring for both an HIV-positive child and a toddler was too overwhelming. "They live in a one-bedroom condo," says Sophie. "Grandpa is home, but he can't handle dealing with a 3-year-old."
So Newman turned to her best friend, Andrea While, who lives nearby. For four years White, 37, a scheduler for a home nursing agency, and her husband, John, 42, an information operator for Southern Bell, had been trying to have a second child. Like Newman, Andrea is white; like Zachary's father. John is African-American.
"I was trying to keep my children from being separated, but at this point I have no choice," says Newman. "Nobody is going to take care of Lauren the way her grandmother is. And Andrea and Johnny have been together for 15 years. They have a house, they have a daughter. They're an interracial couple who want a son. I'm giving them one."
Sophie and her children see the Whites often, and John has already performed such surrogate dad duties as taking Zachary for his first haircut. "That was cool," says White.
For now, Newman and her children continue to live, somewhat precariously, in a neat two-bedroom rental home. Newman has been hospitalized once with an undiagnosed fever, suffers from severe headaches and is tired all the time. Despite her poor health, she cherishes every day. "My children keep me alive," she says. "Zachary looks at me sometimes and says, 'Mommy, don't cry.' " But she does.
MARY H.J. FARRELL, CYNTHIA SANZ, SUSAN K. REED and MICHAEL NEIL
BARBARA SANDLER in Chicago, VICKI SHEFF-CAHAN in Los Angeles, ROCHELLE JONES in Maryland and MEG GRANT and DON SIDER in Florida