Learning to Say Goodby : Families: Single parents with AIDS face the wrenching reality of preparing their children for a future without them. Four discuss the painful choices they must make.

At age 3, Erin was told: Mom isn’t feeling well. She needs to lie down. At age, 4, she was told: Mom and Dad have bad blood, and they will get real sick. At age 5, Erin knew her mother had died of an AIDS-related disease and that her father was probably next.

Now, at age 8, Erin knows exactly what will happen to her. She ticks off a list.

“I’m going to be going with my grandma after my dad dies,” said Erin, her gaze direct, her voice even. “And, if my grandma dies, which she probably won’t, I’m going to be going with my (great) Aunt Sandy. And if my Aunt Sandy dies, which she definitely won’t, I’m going with (family friend) Tangie.”

By contrast, Mari, 10, is kept in the dark about her mother’s AIDS. Mari recently told a counselor at the AIDS Service Center in Pasadena that her mother is fine. End of subject. “Momma,” Mari tells her single mother, “I’m going to live with you forever.” Later she confides to a visitor that she wants to be a librarian or a doctor when she grows up.

Why a doctor?

“Because a doctor can tell if people have AIDS or not and if they’re sick.”

And what is AIDS?

“I don’t know.”

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Two families, two distinct approaches in trying to prepare children for a parent’s death and the stigma of AIDS. Erin’s father and Mari’s mother are clients at the AIDS Service Center in Pasadena. In a sobering nod to the epidemic’s reach, the center is gently steering HIV-positive parents through a new program to help them pick the people who take over child-rearing after their deaths and to teach them how to say goodby to their children.

In the early years of the AIDS epidemic, services such as guardianships and child counseling were virtually unheard of because the virus affected primarily gay men. But the disease’s increasing sweep into the heterosexual population is prompting AIDS service providers to expand their reach to families with dependent children.

Every month at the Aids Service Center, two or three families ask for help with guardianships and counseling. Early this year, the center will hire a full-time legal guardianship attorney.

“Who’s going to take care of the kids?” said Ursula Arndt, coordinator of the center’s Family Pediatric Program. “Can we find enough foster parents? Whose burden is it going to be--taxpayers, private (funding), corporate? Who’s going to love them and educate them? . . . It’s going to be a big social issue.”

Since September, 45 families have come to the center’s Family Pediatric Program for some kind of help. Among them are 105 children.

Parents with the AIDS virus often need to be steered toward handling legal responsibilities, said Ian Stulberg, coordinator of the center’s mental health program. Otherwise, they cling to denial of what the future brings for their children.

“When you’re deciding on a guardianship, you’re confirming you won’t be around to see your children grow up,” he said. “That’s psychologically real hard for people to face.”

*

Most families agreed to be interviewed for this story on the condition that their last names be withheld.

AIDS is crippling families. According to a December, 1992, article in the Journal of the American Medical Assn., 82,000 children could lose their mothers to acquired immune deficiency syndrome by the year 2000, resulting in a possible “social catastrophe.” The study examined only mothers with AIDS because they usually are the primary care-givers. The AIDS epidemic will rival or surpass other leading causes of death in mothers of young children, the researchers said.

“Are we really protecting anybody by shielding them and letting them believe in an age of innocence?” Arndt said. “We have to start dealing with the realities.”

Stulberg advocates honesty with children, step by step and in small doses. Ignorance is seldom bliss in families touched by AIDS.

“It’s harder on the kids in the long run,” he said. “They become confused or they think they did something wrong, and they think that’s why they’ve been kept in the dark . . . As painful as it is, it’s best when parents can be as honest as (possible about) what’s going on.”

Erin, the 8-year-old who eventually will live with her grandmother, is bracing herself for more unhappiness. Her mother died of AIDS complications three years ago at age 33, and her father’s condition was diagnosed as AIDS in 1992; neither knows who was infected first or how. Erin’s mother was a nurse; her father is a former hospital marketing director.

Erin, who does not have the AIDS virus, lives with her father, Tim, at his mother’s house in the San Gabriel Valley foothills. Someday, Erin knows, her 57-year-old paternal grandmother will take over as her legal guardian.

Her parents tried to be honest from the beginning.

“Every step they told me,” said Erin, a straight-A student who still prays at bedtime for happy dreams about her mother. “I don’t think it’s right (for parents) to have secrets. . . I can tell (Dad) isn’t walking right. I would know right then that he had some kind of disease and wasn’t healthy. I wouldn’t need to ask.”

Not that knowledge protects children from pain. Right before her mother died, for hours at a time, Erin pounded boards together in the back yard to release her anguish. When her father dies, she admits tearfully, she probably will lash out at her grandmother.

Tim, 34, is trying to prepare Erin. He shows no major AIDS symptoms, but his T-cell count is dangerously low.

HIV damages T-cells, which are critical components of the immune system. A healthy person has about 1,000 T-cells per cubic millimeter of blood to fight off infections and diseases. Doctors consider a T-cell count of less than 200 a sign of AIDS. Tim’s T-cell count is 51.

*

He talks to Erin about what might happen, holding her in his lap or sitting outside with her on the patio at McDonald’s. Every night, they sit together and work on her homework, sometimes for two hours. They look at pictures of her mother. Erin goes to group counseling for children with terminally ill parents at Huntington Memorial Hospital in Pasadena.

“The hardest part is knowing that I’m not going to be here for Erin,” said Tim, who sometimes lies sleepless at night, worrying about his daughter’s future. “Not a day goes by when I don’t think about that.”

That burden, said Tim, is heavy enough. He can’t imagine the stress of hiding his condition from Erin.

Mari’s mother, Teena, knows it’s time to tell her three children.

“It’s real hard to hold a secret in,” the 29-year-old Azusa woman said.

Finding a guardian also was hard. Teena is separated from her unemployed husband, who seldom visits the children. He is not infected with the virus. She has a mother and nine brothers and sisters, all of whom live in the area, but she has felt estranged from them since her AIDS diagnosis. They all mistakenly believe that AIDS is spread through casual contact; she can expect no shelter for her children from them, and she doesn’t want it.

“I wouldn’t want my kids to be (with them),” Teena said. “I don’t want them to be in a place where they feel like I do . . . like an outcast.”

So she is turning to her best friend since kindergarten, a single mother in Pasadena with two small children.

Teena and her children live in a four-bedroom condominium, subsisting on government rent subsidies and welfare. Before her illness, Teena worked as a preschool assistant and was studying early childhood education at Pasadena City College. Her condition was diagnosed last summer, and she believes she contracted AIDS from a former boyfriend.

So far, she shows no serious signs of the virus, only fatigue and sometimes headaches or nausea. But her T-cell count is down to 50.

She prefers not to discuss the virus that is sapping her strength, slowing her walk. She fights it with denial, sometimes not taking any of her seven medications. And she would rather talk about her three kids--how Mari, 10, sneaks books into bed every night; how Corrine, 8, already has two or three boyfriends, depending on which day you ask; how Richard, 5, will surely be a computer whiz someday.

But a sense of urgency hovers. Teena feels it on days when she doesn’t have the strength to lift Richard to his top bunk or when she’s too tired to help Mari with her math homework.

Last month, for the first time, Teena took Mari to talk to her counselor at the AIDS Service Center, although neither she nor the counselor revealed what the meeting was about. Teena grimaced when she was told what Mari said about wanting to be a doctor and help people with AIDS. She had thought the children were happily unaware of her illness.

“It’s hard to keep things from her,” Teena admitted sadly.

Her New Year’s resolution was to tell all the children that she has AIDS and enroll them in counseling.

“I want to be able to tell them that this is what happened, and even though something tragic came out of it, (our relationship) was something beautiful.”

Teena plans to tell them to hold tight to their memories--the mornings when all three little ones sneak into her bed, one by one; the Christmas wreaths they made out of leaves and twine; their first snowfall in Portland, Ore., when they all ran outside in their pajamas at 3 a.m. to make snow angels.

Dorothea Hollins already has carried through on her plans. She wanted to spare her children the sight of her AIDS-related drenching night sweats and seizures.

Last summer she sent her two young children to live with her 22-year-old daughter in a small Mississippi town. Her daughter, an accounting major in college, is married to a steel-mill worker.

The decision came after the days of watching Argie, Dorothea’s playful 10-year-old son, run to his room and shut the door when her nurses hooked her up to intravenous drips. It came after the times she was too weary to watch her 12-year-old daughter, Tyshameka, dance and sing in school productions.

“I felt like I wasn’t really being a mother to them, and they deserve something better,” said Dorothea, who believes she was infected by her unfaithful husband. “I can’t take care of my children. I can barely take care of myself.” Her husband, a pastor, died eight years ago, 22 days after his condition was diagnosed as AIDS.

Dorothea, a former Xerox Corp. administrator, now spends most of her days watching TV and sleeping at her parents’ cramped three-bedroom house in La Puente. She is weak from recent bouts with pneumonia and fighting off AIDS-related dementia. Her T-cell count is one.

From the beginning, Hollins had braced her children for the end. So when she told them it was time for them to go on without her, they packed up and left. No questions. No arguments.

Now: “I have an emptiness.”

Lidiana has reason to hope that her goodby day with her children is far off. She is HIV-positive but does not yet have AIDS; half of HIV-positive patients do not develop AIDS for 10 years.

Yet the 19-year-old mother of two preschoolers already finds that everyday routines suddenly take on new significance--playing soccer with her toddler son, struggling to get her little girl’s Aladdin nightshirt off in the morning.

At the urging of her counselor, Lidiana signed legal guardianship papers for her children after she was diagnosed as HIV-positive in 1991. She arranged for her mother, who lives in Gardena, to take care of Diana, 4, and Jose, 2. As a backup, she asked her children’s two godmothers to step in.

But Lidiana, who shares a Highland Park apartment with friends, says she is the only one who can rock the children to sleep in her arms every night. She is the only one who can feed her two picky eaters by “airplaning” vegetables into their mouths.

“See, nobody’s going to treat them like a mom treats them. . . . The hardest thing for me is to leave them and think they (the new guardians) are not going to take care of (the kids) the way I take care of my kids.”

Lidiana was first pregnant at age 15. Ever since she was 8, when her little brother was born, Lidiana has wanted to be a mother. She was always chunky as a child, so she used to stand in front of the mirror and jut out her stomach, trying to imagine what it was like to be pregnant.

She learned she was HIV-positive after her second child was born; neither of her children have the AIDS virus. Lidiana believes she was infected by her former boyfriend, who used intravenous drugs without her knowledge.

Lidiana suffers from headaches, fatigue and shingles, which are painful clusters of blisters. This year, she will start taking her little girl to counseling at the AIDS Service Center. She doesn’t know exactly when--or how--she’ll tell the children she is sick. But she knows when she’ll say goodby.

“When I see myself lying in the bed and can’t walk or see my kids, I’m going to disappear from their lives,” Lidiana said resolutely. “You see, I want them to remember the mom from now. I don’t want them to remember the mom who is lying in the bed, suffering and in pain.”

Single Parents and AIDS

All parents in this story, except one, spoke on condition that their last names be withheld. None of their children have the AIDS virus.

Parent: Tim, 34. Child: Erin, 8. Parent’s diagnosis: AIDS. Occupation: Former hospital marketing director. Eventual legal guardian: Paternal grandmother. Other: Erin knows her mother died of an AIDS-related illness, and her father might face a similar death.

Parent: Teena, 29. Children: Mari, 10; Corrine, 8; Richard, 5. Parent’s diagnosis: AIDS. Occupation: Former preschool aide. Eventual legal guardian: Teena’s best friend. Her mother and siblings mistakenly think AIDS can be spread through casual contact. Other: Teena hasn’t told her children she has AIDS.

Parent: Dorothea Hollins, 44. Children: Tyshameka, 12; Argie, 10. Parent’s diagnosis: AIDS. Occupation: Former Xerox administrator. Legal guardian: Dorothea’s sister, in name only. The children live with her eldest daughter, Tiffany, 22, in Mississippi. Other: Dorothea’s children know their father died of AIDS-related causes and their mother is likely to die of the same.

Parent: Lidiana, 19. Children: Diana, 4; Jose, 2. Parent’s diagnosis: HIV-positive. Occupation: Unemployed. Legal guardian: Lidiana’s mother. Other: Lidiana’s children are too young to understand their mother has the AIDS virus.

Facts on Families and AIDS

* Four months ago, the AIDS Service Center in Pasadena started the family pediatric program, which provides free care to families affected by the AIDS virus. Because of a growing need, the program’s services include counseling for parents with AIDS and their children. The program serves 45 families and 105 children.

* According to a December, 1992, study in the Journal of the American Medical Assn., 82,000 children could lose their mothers to AIDS by the year 2000, resulting in a possible “social catastrophe.”

* The AMA study also notes that each year, nearly 13,000 children and adolescents lose mothers under the age of 50 to cancer, and about 5,000 as the result of car accidents. In contrast, the AIDS-related number is about 7,000 and growing rapidly.

* In Los Angeles County, 23,156 AIDS cases have been diagnosed, according to the Department of Health Services. In the United States, that number is 339,250, according to the federal Centers for Disease Control and Prevention. Statistics are unavailable on the number of parents with AIDS.

* AIDS ranks fourth among leading causes of death for women ages 25 to 44, according to the Centers for Disease Control and Prevention.