By Paula Day

The neighborhood is quiet. The house sits at the end of a cul-de-sac. A camper-trailer is parked in a graveled space in the back, a swing set and sand box nearby.

The typical, middle-class family with children and pets was like many others in east Cobb County in 1989 except for one devastating fact. That May they learned one of them was infected with the AIDS virus. Tests on the rest of the family showed two others were HIV positive also. They belonged to a small but growing number of families living with AIDS.

Today Tom and his five-year-old daughter lead a quiet life. “It’s a big deal to go grocery shopping on Friday morning,” he explains. Weighing in at 131 pounds, his six-foot-three figure is noticeably thin. But his eyes are bright and his mind is quick if he got enough sleep the night before. He may have two good hours each day when his energy level is high enough for him to do essential household chores.

Marilyn, his daughter, is a live wire. She’ll cook a meal in her play kitchen for a visitor, take her swing to daring heights, run up and down the stairs multiple times to check out what the adults are doing.

She seems mature for her age. Sitting in the sunlit breakfast nook, “please” and “thank you” flow naturally through her conversation.

Tom, 35, is determined she will “not just grow up, but be raised.” In part this determination comes from his awareness that an ill-mannered child with AIDS would be even harder to manage for those who must fill his parenting shoes if he dies before she does.

This realism permeates Tom’s attitude. “You have to get past the shame,” he says. “Once you get past that barrier, you can ask for help.”

Early on Tom told his boss of the diagnosis and this forthrightness saved him his job as a computer systems coordinator-analyst for Cobb County schools. He is now on full disability.

Another source of help was Sister Mary Jane Herlick, a member of the archdiocesan Task Force on AIDS. She learned about the family in May 1990, when Tom’s wife, Anne, the first to be diagnosed, was still living.

In addition to emotional support and some financial aid, Sister Herlick put Tom in touch with available resources such as the AIDS Legal Project of the Atlanta Legal Aid Society, Child Kind, a facility offering foster care for children with AIDS, and Jerusalem House, a home for persons with AIDS.

During the summer of 1990 the outreach and AIDS ministries of St. Ann’s parish in Marietta began what is an ongoing ministry to the family. They provided babysitting during the day while Tom was still able to work, took Anne to the doctor and sat with her during the final weeks of her illness. “We wouldn’t have survived without them,” he asserts.

On total disability now, Tom doesn’t have “to be in a hurry. We do 10 percent of what an average person does on a daily basis,” he says, “but it’s like 300 percent. You pick projects you can accomplish with the time and energy allowed. This way you can keep a sense of accomplishment.”

“I take what could have been in the next 40 years and pluck out the enjoyable times. You learn how to enjoy life better. If you don’t learn, you’re in for a miserable existence until you die. You have to control the issues,” he explained. Both he and his daughter Marilyn now have “full blown” AIDS.

The family’s pediatrician was instrumental in getting them accepted by the National Institutes of Health in its program for persons with AIDS. The two make regular trips to the Bethesda, Md. Facility where they are part of a study using the experimental drugs ZAT and DDI to control the AIDS virus.

Dr. Lauri Weiner coordinates the pediatric HIV psycho-social support programs for the National Cancer Institute and is Tom’s social worker. She says children and women are the fastest growing population group being diagnosed HIV positive.

“The intensity of the problems faced by these families is extreme,” Dr. Weiner explained in a telephone interview. She cited the stigma of the disease and the accompanying struggle about disclosing the diagnosis and to whom, as well as the isolation.

Many HIV positive women come from a minority background and are already burdened with poverty, discrimination and are single parents with weakened support systems. However, HIV infected women come from all walks of life, according to the social worker.

Now Dr. Weiner is seeing a growing number of families where the mother has died, the father is also infected, and the issue of guardianship must be faced. Such realistic planning for the care of a child can be a difficult emotional hurdle for the parent, she pointed out, but once overcome, the specific decisions about the care bring a measure of relief.

In an HIV/AIDS surveillance report issued last month by the Centers for Disease Control in Atlanta statistics show that 3,598 children, 12 and under at the time of the diagnosis, have been diagnosed as having AIDS since the Centers for Disease Control began keeping records in 1981. Eight new cases of children under 13 having the disease were diagnosed in Georgia in the last 12 months.

Several months before Anne died in November, 1990, she wrote a letter seeking out other families with AIDS. She hoped to form a network of support among these families with their unique set of problems.

“We are not the people with AIDS you see in the news,” she wrote. “We just happened to have grown up in a time when having more than one relationship before marriage was acceptable.”

While the number of new cases attributed to homosexual contact actually dropped in both 1990 and 1991, the rate from heterosexual activity continued to climb each year, according to the U.S. Department of Health and Human Services.

Tom and Marilyn take care of one another in the daily ways families do. He recounts with humor and a hint of indulgence the time she brought him breakfast in bed – a sticky sweet waffle dripping in syrup and butter. But he looks forward to August when she will start school and he will have a little time off from “the joys of being father, mother, best friend and worst enemy.”

To facilitate their monthly trip to Maryland, Tom bought a camper-trailer and last summer’s trips were an experiment in which “we tinkered with life,” as he puts it. They stayed at campsites, making friends with other campers. They swam in the ocean and found shells and sharks’ teeth on the beach. When they ran into new friends again he would wave and call out, “Hi, we’re still here. We’re still alive.” He uses these opportunities to educate people about AIDS, a mission he considers “part of my calling.”

At the suggestion of Father Gene Barrette, MS, Sharon Collins of St. Ann’s AIDS ministry, Tom considered sending Marilyn to St. Joseph’s School in Marietta. The two felt the smaller school community would be more able to offer a nurturing environment for the child. But considering the distance and his increasing physical limitations, Tom has opted to take advantage of the public school system’s bus service and she will go to a nearby school in the fall.

By law the school system must provide her education. While some may think a child with AIDS is a threat to others, Tom points out that because of a weakened immune system, the child is vulnerable to contagion from others. While other young children memorize their telephone number and street address, Marilyn has been instructed by Tom to say, “Don’t touch me. Get me a towel. Call my Daddy,” in the event she injures herself. As for himself, Tom says, “What starts me out every morning is that kid coming in and waking me up with ‘Good morning, Daddy.’”

St. Ann’s AIDS ministry continues to support Tom and Marilyn. Members frequently call to check on them and are available for babysitting. Someone from the ministry brings in a meal each Friday. They have helped with yard work and on Sundays someone will take care of Marilyn if Tom decides to attend the parish support group for person with AIDS.

“We’re there for him as much as he wants us to be,” Mrs. Collins said.