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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.

January 13, 1994|RENEE TAWA | TIMES STAFF WRITER

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."

*

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.

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