Remembering a Special Child

By Pete Sheehan, The Long Island Catholic , Sept. 2, 1998

susan and theresaWhenever Susan Russo sees a child with any kind of physical impairment, “I see part of Theresa,” her own daughter who died almost seven years ago.

Not only does she see her daughter, who died at the age of five-and-a-half after struggling all her life with microcephalay and cerebral palsy, but Mrs. Russo also tries to reach out and help those other children.

Shortly after Theresa’s death, Mrs. Russo, along with her husband, Vincent Russo, and family friend Father James Maltese, associate pastor of Holy Name of Mary Church, started the Theresa Foundation. The foundation seeks to aid children with impairments and their parents.

Describing the foundation as a ” ‘fill in the cracks’ organization,” she said that they strive “to touch the lives of special needs children through its support of workshops and programs of enrichment and therapy.”

So, the Theresa Foundation has supported such programs as the “All-Island Handicapped Sports,” disabilities awareness programs, and a horseback riding program.

More recently, Mrs. Russo said, the foundation has made a special effort to support “art programs for special needs children,” including dance, music and other arts.

“In any school district, the first thing to be cut in any budget crunch is the arts – even more so with special needs children” she told The Long Island Catholic.

Mrs. Russo, president of the foundation, and Father Maltese, vice president, recently spoke with TLIC about Theresa and the foundation bearing her name in an interview at Holy Name of Mary’s rectory here.

Gratitude and sadness

As she recalls her daughter’s life, Mrs. Russo speaks with a combination of love, gratitude, sadness, and humor.

Theresa was born in 1986 to the Russos of Our Lady of the Miraculous Medal Church, Point Lookout, who already had two other children, Dante, then four years old, and Elizabeth, then three. The Russos subsequently had another child, Robert, who is now 11.

After birth, Theresa was diagnosed with microcephalas, a condition in which the brain is less than normal size, inadequate for controlling the body’s functions.

The diagnosis was of course disturbing, but it was made worse by the reaction of some of the medical personnel.

“They tell you that you shouldn’t bring your child home, but put the child in an institution.”

“You have two normal children at home,” the Russos were told, “How can you bring this baby home?”

They did, however, take her home. “Taking care of Theresa was a lot of work, but I never thought of it as work.”

Theresa’s mental development never went beyond the level of a normal four-month old baby, and her physical growth was limited. She required a wheelchair all her life.

“It was like having a permanent baby.” When she died, Theresa weighed only 15 pounds. “I had a cat that weighed more.”

An early intervention program with therapists coming into the home was quite helpful. “It was an education for all of us.” In time, Theresa attended a United Cerebral Palsy Association school.

While devoting so much time and effort to Theresa, Mrs. Russo also worked hard not to neglect her other children. “I’ve seen that happen,” she said last week.

Theresa as a teacher

Theresa proved a good teacher for her siblings. “They learned acceptance. They learned patience. They are so compassionate. Many adults could learn from them.”

In response to a question, Mrs. Russo said that families that have a child with a physical or development impairment have a higher rate of divorce than other families.

“I see it. We run into a lot of single mothers. I don’t know if it’s the stress or the guilt.”

The Russos, however, were able to cope.

Mr. Russo, an attorney who handles many cases involving people with disabilities, was often away on business, but spent as much time as he could with her.

“Vince would come home after these long days and spend hours with her, doing her exercises with her.”

“I think our faith had a lot to do with it. You have to accept some things. Sometimes the answer is right in front of you, but you don’t see it.”

Part of the answer lay with Theresa herself, Mrs. Russo said. “She was cool. We took her everywhere. She had a nice little personality. People wanted to hold her. She had almost an aura about her.”

Mrs. Russo speaks fondly of the first time that she saw Theresa smile.

“Nobody could believe that she could smile,” Mrs. Russo said, so she kept a camera nearby. The next time, Mrs. Russo captured it on film.

“I made copies and sent them to everyone.”

The Russos coped with the challenges as Theresa grew older and taller. Even her limited physical growth, however, put added strain on her under-sized brain, Mrs. Russo said.

In 1991, after one difficult year, however, two days before Christmas, Mrs. Russo saw Theresa suddenly turn red and then stop breathing. She tried CPR. Emergency medical personnel were called in, but “she died in my arms.”

Not long after, Father Maltese and Mr. Russo came up with the idea of starting a foundation in memory of Theresa.

Through a variety of money-raising activities, the foundation last year was able to donate $42,000 to a range of efforts for children with special needs and their parents.

The foundation is very much a family affair. Its logo was designed by Theresa’s brother, Dante, who was then nine.

Now, Dante has started a dance company to raise money for the foundation. Dante and Mr. Russo are also writing a book, “The Girl in the Pink Wheelchair,” to help children understand other children who have special needs.

A dance company is a fitting way to raise money, she said, because they support arts programs.

“We find ourselves getting very involved in supporting arts for the kids,” Mrs. Russo, who has a background in dancing, said.

“These kids are always told they can’t. They can’t dance because they can’t even walk. They can’t sing because they can barely speak. They can’t paint because they can’t hold a brush. We need to show these kids that they can.”

Anyone interested in more information can call the Theresa Foundation at 516-432-0200.