By Suzanne Haugh, Staff Writer

MARIETTA—“Little Marilyn” Whalen died at the age of 6 in 1993 as a result of the HIV/AIDS virus.

Although she never really knew what it was like to be a healthy kid, she was able to go to school like other children her age and wished for a dollhouse one Christmas. She knew the feel of the ocean’s water on her body and searched for shark’s teeth along the shore with her father while en route to sessions of a government research program on HIV/AIDS in Washington, D.C.

She knew death: her mother, Anne, dying from HIV/AIDS in 1990, leaving Marilyn’s father, Tom, who was also infected with the virus, as her primary playmate, disciplinarian and comfort. Through her father, the whirlwind of a little girl was learning how to bridle her energy with good manners and what to tell people to do if she should get a cut.

“Marilyn was a tough little girl,” said Sharon Collins, coordinator of the St. Ann’s Church AIDS ministry. “She was determined, as best she could, to live a normal life.”

The entrance of the Whalen family onto the client list of the then-fledgling AIDS ministry at the Marietta parish “catapulted” the ministry in 1990 head-first into the intricacies of living with what was at the time a relatively unknown illness and, for many, the equivalent of social leprosy.

But the presence of a family with every member suffering from HIV/AIDS broke through the stereotype of the virus as a “gay-only” illness. It allowed parishioners, who might have been reluctant at first, to move more easily beyond judgment into compassionate ministry to those who are among the suffering Christ on earth. The question “How did this person contract the virus?” was replaced, in all cases, with “How can I help?”

As those in the ministry provided meals for the Whalens, babysat, held long phone conversations, drove them to doctors’ appointments and visited with each family member during those intensely personal moments before death, life sprang forth in the form of new friendships and a strengthened community.

“It was the worst scenario anyone could have imagined,” said Collins, commenting on the immense burden carried by this one family. Within two months of starting the ministry, members were scrambling to meet the needs of the family. “We had no choice,” Collins remembered. “We were meant to be there to do this ... The parish was pulled in too.”

That fall, ministry members worked to keep the family going—babysitting for Marilyn while Tom was still able to work as an employee of Cobb County Schools, driving Anne to the doctor’s office and growing so close to Anne, Tom and Marilyn as to enter into the family dynamics.

“Tom could be very difficult; you’d have to have known him,” Collins said. “He used to give me a hard time about Marilyn, that I let her walk all over me.” She remembered the Christmas after Anne’s death in November 1990.

“When Anne realized that she wasn’t going to be around for Christmas, she asked us to get something for Marilyn.”

Marilyn wanted a dollhouse although Tom “was not pleased with me” for getting one because he thought the gift was too much, Collins said. “People donated money for it from the parish ... Tom thought it was far, far too extravagant, but I told him that I had made a promise to Anne before she died.”

Marilyn would giggle with delight the times Collins wiggled her way into the dollhouse. “She was a very special little girl, very endearing.”

It was through Marilyn that her parents discovered that they were infected with the HIV/AIDS virus. Marilyn Rich, Tom’s mother, recalled how Anne and Tom found out. “They discovered it through the baby. They kept having to take the baby back to the doctor. She would get sick and they’d treat that, then the next day it would be something else.”

This was back in 1986, Rich said, when most thought “the only people with AIDS were gay ... Doctors realized (Marilyn’s condition) had something to do with her immune system and they asked for permission to test her. They found that she did have it.”

“The worst thing was when Tom called to tell us he had it,” Rich said. “It was the biggest shock.”

Anne had become very ill, then, having bouts with mouth sores. Months before Anne died she had hoped to start a network of support among families with HIV/AIDS and she wrote a letter; an excerpt appeared in a 1992 Georgia Bulletin article on the family. “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.”

Rich came to Atlanta to help her son “get squared away” after Anne died. Finding daycare for Marilyn so Tom could work became the priority. “You can’t lie about (having) it,” Rich said. They finally found one woman who would accept Marilyn, but workers there threatened to leave and she had to deny Marilyn access.

Fortunately Tom’s honesty with his employer early on about having HIV/AIDS and his inability to find care for Marilyn prompted his employer’s decision to put him on total disability; he could care for Marilyn full time.

“The two years afterward were really a blessing,” said Rich, adding that Tom constantly worried, though, about what would happen to Marilyn if he died first. At the time, Rich lived with her husband in a Florida condominium that did not allow children. She would not be able to care for Marilyn, whom she described as “four going on 35.”

“She was very good with Tom,” Rich observed. “(But) she knew from right on that everyone knew she had the disease and would cater to her.”

Still, Rich realized, “Little Marilyn never knew what it was like to be well. Her biggest problem was catching any little thing. The biggest thing was her digestive system which (because of the virus) was all screwed up.”

Tom and Marilyn were fortunate still to be a part of the government study of the virus that brought together people worldwide who were infected with HIV/AIDS or were studying it. The government paid their way and paid for their treatment. Tom bought a camper for the monthly father-daughter trips to Washington, D.C.

In the 1992 Georgia Bulletin article, the then 6-foot-three, 131-pound Tom had commented: “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.”

Tom and Marilyn, now with full-blown AIDS, continued to rely on St. Ann’s ministry throughout this time. In 1993, Marilyn went into the hospital twice, Collins said, coming home for a time before being readmitted. Collins remembered bringing Marilyn a pizza that the little girl wanted after coming out of intensive care. When she discovered it wasn’t a pizza from a particular place, Marilyn “pitched a fit,” Collins said. “Her father, a very tough disciplinarian, then said that she couldn’t watch a particular program on television.” Later that day, Collins received a phone call. “Marilyn had died in Tom’s arms,” she said. “I could probably say that some of the fire went out of him (after that).”

While saddened, Marilyn’s death brought some peace. “It was really a blessing when Little Marilyn died,” Rich said. “Tom constantly had wondered what would happen to her if he went first ... He didn’t want her to die, but he was relieved.”

During visits to care for her grandchild and son, Rich became friends with Collins and another St. Ann’s volunteer, Martha Ruggiano, who coordinated an AIDS benefit for St. Ann’s at the time. Ruggiano had received a phone call from Tom who was calling to RSVP for the benefit and told her that he was one of the ministry’s beneficiaries. “Tom and I sort of clicked,” she said. That night they talked for three hours on the phone and discovered that they lived in the same neighborhood. Tom, who had already lost his wife and daughter, and Ruggiano became instant friends. She watched Whisper, Tom’s Shih-Tzu, when he would make his monthly visit to Washington and cooked for him.

“I’d go over and visit because he was my buddy,” Ruggiano said. “He always talked about his recovery and we talked about his wife and losing his daughter.”

During one of her visits to her son, Rich met Ruggiano and they keep in touch today. “We’re very close now,” Ruggiano said. “We’re very good friends, more than friends. Before Tom died he asked me to take care of her. He and his mom, we just clicked; it’s a strange thing. Now I go to Fort Lauderdale to visit her and she’s spending Christmas here.”

Tom’s visits to Washington stopped in the spring of 1995. “They told him there was nothing else they could do for him,” Ruggiano said. “I noticed an immediate change; he gave up hope ... Tom never talked about dying, only his recovery, even though now he knew it wouldn’t come unless there was a miracle cure.”

His health continued to slide downhill. Rich left her home and husband to care for “Tommy” later that year. Sadly Tom realized he had to trade his beloved Stealth for a car his mother could use to take him to doctor’s appointments and other places. Ruggiano recalled one time when Tom took her to see a house he wanted to buy.

“We both knew it wouldn’t happen, but it gave him something to hope for and to think about other than the end of his life,” Ruggiano said.

Rich spent three months helping her 38-year-old son, still bound and determined to be as independent as possible, with day-to-day living. “It was sad to watch,” she said.

At the request of her husband, Rich had made plans to join him on a trip. She recalled in amazement how Collins had orchestrated enough volunteers to care for Tom while she would be gone. But two days before she was to leave, Tom went into a coma. “There was no way I could go,” Rich said.

Ruggiano made a final visit with Tom, who was still semi-conscious, telling him that it was okay for him to go. “There was a sense of closure on my part. This person had been hanging on for a long time ... I didn’t want to see him go on, but it wasn’t a quality life ... He was a very great person, very intelligent; it was a great loss for me, a very difficult loss for me.”

Rich also mourned her son. “Even though we had all the time to prepare, that doesn’t make it easy, to lose a son. I’m glad that I could take care of him. I never thought as a mother that I would have to do this. I’m just thankful (I could).”

After Tom’s death, Ruggiano took a break from the ministry. “I couldn’t jump back into the AIDS ministry,” she said. “I had become emotionally involved, which you’re not supposed to do. I don’t regret it for one minute and if I had to do it all over again, I’d probably do more.”

It’s been five years since Tom’s death and Ruggiano has had time to reflect. “It’s a strange thing how this all sort of happened. I know I helped him a lot ... He didn’t fill a void; he just added to my life. He was humorous and smart. He could be difficult at times, but he added to my life, to my family and friends ... It brought us a lot closer.”

Faith has always been an important part of growing up in her family, said Ruggiano, who converted to Catholicism after dating a Catholic. “I was just drawn to it,” she said. “What you hear growing up and what I learned were two different things. After I learned about it, I loved it.”

In situations such as Tom’s death, Ruggiano draws strength from her faith. “More things happen as we’re going through life. We must go to our faith for help and strength. Sometimes people ask the question ‘Why did something like this happen to this person? Why was he taken away?’ God has a reason. It’s not for us to question.”

For Rich, who grew up on a Nebraska farm and describes herself as “a pretty strong person,” she wonders “if God is in control why he doesn’t do a better job.” She recalled a time when her mother questioned a priest about why one of her sons was born with spina bifida. “He told her, ‘He gave him to you because he knew you could take care of him.’ She spent her whole life caring for him. It makes me wonder.”

After losing her only son, grandchild and daughter-in-law, Rich also cared for her husband who died from leukemia and Parkinson’s disease. “My whole family is gone,” she said, “but Martha.”

The two stay close, e-mailing each other frequently and vacationing together. “I mean this from the bottom of my heart; I love Marilyn. She’s a wonderful person. I’m in awe of her, how she’s been through, as a mother—and I have a daughter of my own—the death of a son ... She’s fun, loving, kind. I rarely have heard a negative thing from her even though she’s lost her only grandchild, only child and husband, whom she sat with for a whole year like she sat with Tom. I’m just amazed by this woman.”

This year, Rich will spend Christmas in Atlanta with Ruggiano and her family. They’ll probably attend 4 o’clock Mass and gather with family and close friends for a buffet dinner.

Rich, having braved many snowy, cold winters growing up, hopes that this upcoming Christmas in Atlanta will be at least drier than one of the last ones she and her husband spent here when “Little Marilyn” wasn’t even two months old. Rich, who grew up in hard economic times, recalled the abundance of Christmas cheer in her son’s home during that visit. “I had never seen so many presents and fancy decorations,” she said. Tom had carried in a living Christmas tree with its stump wrapped in burlap. The tree had been sitting outside in the rain and Georgia’s red clay was seeping onto the floor.

She said the holidays are not difficult to maneuver through emotionally now with many family members gone.

“I’m not a very sentimental person,” she said. “I’m the type of person that if there’s something I can do to change something then I’ll worry about it and do it.”

There are times, however, when she is moved. “Sometimes I may get choked up at church,” she said. “But what’s done is done. Thank God (Tommy) died and isn’t still hurting.”