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Mother looks for way to say goodbye

Vanessa lives a life most parents glimpse only in nightmares.

In this terrifying dream, a mother or father tries in vain to reach a wailing child. The parent sees danger and hears the child's cry, but can't seem to help.

Most parents wake from such dreams to healthy children and healthy lives. That is not going to happen to Vanessa. In addition to being the mother of two young daughters, she is dying of AIDS.

Vanessa expects to die long before her two little girls stop needing her. But out of this nightmarish situation, she has come up with a vision that could help not only her daughters, but thousands of other children orphaned by AIDS in the future.

Vanessa, who asked the Times not to print her last name, wants to set up a program that would match the children of HIV-positive mothers to families who want to adopt them.

That way, parents who barely have a chance to say hello to their children will at least have a way to say goodbye.

"It is a dream she has, to keep her family together,"' Marylin Merida, coordinator of the Tampa AIDS Network, said of Vanessa's endeavor.

It is a project borne of emotion. After discovering she carried the virus that causes AIDS, Vanessa worried about who would care for her daughters, ages 2 and 3, when she died.

A family member asked to take her 3-year-old, who also has the human immunodeficiency virus. But because children with AIDS have exhausting health care needs, that person felt they would be unable to care also for Vanessa's other daughter, who does not carry the virus.

Vanessa's solution came in 1992 as she discussed the problem with TAN caseworker Elma Settle. Settle said her family would like to adopt the 2-year-old.

Since that time, the two families have worked together through a long and often emotional legal process. The results have convinced Vanessa the experience is something that could benefit other families.

"Think of all the women going through hell to have children," she said. "Why exhaust all this (effort) when you have these kids" who will not have parents.

A critical and expanding need

Several months ago, Vanessa arranged a meeting with members of TAN, which provides health and social services to mothers and children infected or affected by HIV.

"I threw it out there on the table," she said. "I said, "Something has to be done about the children that are going to be orphaned.'


The members of TAN were sympathetic, but could not set up the adoption program. Merida said TAN's funding requires the agency to follow specific guidelines of operation, and arranging adoptions is not among them.

"I think this is something Vanessa will have to take on as a parent," Merida said. "This agency does not do that."

It's hard to tell how many children will be orphaned from AIDS in just the next decade. Several years ago, before experts realized how many women eventually would get the virus, it was estimated that AIDS would leave about 10,000 orphans nationwide by the year 2000, Merida said.

"We recognize that it's going to be a critical and expanding need," she said. "We haven't had too many die yet. But down the road, when illness sets in, all of a sudden you're going to see people dying and these kids flooding the system."

Only two of the six parents TAN sees in its Pediatric Demonstration Project, which offers services to families affected by AIDS, have made after-death arrangements for the care of offspring, Merida said.

The children of parents who have not made arrangements could go to relatives, some of whom may not be capable of caring for the child. Or they could be handed over to the state.

"The choices they have are not the best choices," Vanessa said. "Nobody wants their child to be in the (HRS) system."

Vanessa sees her program as a viable option. But she says she will need help in setting it up and keeping it going.

"If I could get together with some professional people who could head this," she said, "it would be a lot easier."

The agency would include a lawyer, a therapist, adoption officials and someone who can work with TAN clients. The lawyer would handle the many legal documents, the adoption officials would provide knowledge and the names of adoptive parents, and the therapist would be there to help everyone, including the child.

Vanessa is adamant that the adoption not become a financial hardship for the adoptive or AIDS-affected families. The agency would work only as a meditator, she said, and everything must be as inexpensive as possible. Natural parents cannot expect adoptive parents to provide them with financial support.

"We're not here to support HIV mothers," she said. "Mothers should think, "This is something I'm doing because I want a better life for my child.'


Sorting through the problems

Ideally, the program would allow AIDS-infected parents to get to know the family who will adopt their child.

The parents and the adoptive family could even become friends. Vanessa said she and Settle's family spend holidays together, and her daughter calls Settle's son "brother."

But arranging for your child to develop love for another person can be difficult, particularly when AIDS-affected parents do not know how much time they have left with their child.

Meanwhile, adoptive parents have to deal with the waiting, and the fact that a tragedy must occur before the move is possible.

For this reason, Vanessa feels a good therapist is essential to the program. It is important to understand that the emotions can be worked out.

"It's not an easy process by any means," she said.

Vanessa's situation is a good example. Her 2-year-old has become very attached to her and has been fighting leaving home when Settle comes to pick her up.

"I think it's just something she's going through," Settle said. "I remember when my son was 2, he couldn't let me out of his sight."

The mothers sometimes differ on specific ways of raising the child. Each has agreed to a "when she is in your care, do it your way" attitude.

"She doesn't do everything over there I would do," Vanessa said, "but I don't expect her to."

Better than regular adoption

Despite the potential problems, Settle and Vanessa agree the adoptions are worth the work.

The two women have become close friends, and the families try to spend holidays together. Settle said she and Vanessa have a mother-daughter relationship.

It is to Settle that Vanessa has entrusted the memories she wants her child to hear: stories from the girl's infancy, her family history, her hopes, dreams and love for her daughter.

Settle knows all the little, seemingly unimportant, things that may make a difference later, like that Vanessa can't stand green beans.

"I will get to know her as a kid," Settle said. "I'll get to see how she interacts with her mom and how things (work) that in the future will help me."

By addressing her problem, Vanessa has found the peace of mind necessary to tend to her illness. It was not that way last year, when she found herself hospitalized before she had made all the necessary legal arrangements.

"I couldn't get (well)," she said. "I could not let myself stay in the hospital."

Now, Vanessa said, her child benefits from a wealth of parental wisdom. Adoptive parents should view the early relationship as a kind of "training program," she said.

"You know how you always wished when you had a first baby that you had a handbook?" she said. "These kids come with a handbook."