A Little Girl's Legacy...continued

It's not all sweet potatoes and perfume. The children at Angela's House can't feed themselves or eat solid food - the pork chops and string beans and everything else has to be pureed. Three of the boys are fed only special liquid diets through tubes into their stomachs. Eric Eoviero, 11, has cerebral palsy. Michael Savoretti, 12, has microcephaly, an abnormally small head. Both boys have seizures and frequent bouts of vomiting.

In the den at noon on a Saturday, Fran Savoretti, 39, held her son Michael. She smiled at nurse Susan Wilson, who came from the kitchen holding a bottle of white liquid.

"It's lunchtime," the mother said.

The nurse pulled the boy's shirt above his belly, opened a snap to a feeding tube into his stomach and plugged in another tube from the bottle.

"It's like a flip-top to a beach ball," the mother said.

"Here you go, Mike," the nurse said.
"Fill 'er up," the mother replied.

The liquid ran silently and quickly into the boy's stomach. In about a minute, Michael started to squeak.

"He's talking," the mother said, wiping the saliva hanging from her son's lower lip. "That's his happy sound."

Save all the sad stories, the seven survivors seem to be saying. The story of severely disabled people is as much about love and understanding as it is about sickness or sorrow.

"People can look at these children and say it's heartbreaking," said Heidi Benjaman, 37, the nurse manager at Angela's House, "but you have to be able to get past that. These kids put things into perspective. We all have problems, but our problems are minor compared to theirs. It makes you thankful for what you have - and what you don't have. Maybe these children are here to make us better people."

Framed words fly off the wall in Michael Savoretti's room: "God danced the day you were born. You're loved, you're beautiful. You are a gift to all mankind."

A gift like that comes at a crushing price for a parent with dreams for a child. "In the beginning, after Angela was born, I was mad at God," Angie Policastro said. "I hated him, because how could he let this happen? A lot of people go through that. I don't ask why anymore, because I know there is no answer."

Harvey Weisenberg and his wife, Ellen, have been changing the diapers of their mentally retarded son, Rick, for 43 years. Weisenberg, 68, a Democratic state assemblyman from Long Beach, met Bob Policastro five years ago and learned about Angela.

"Bob and Angie got the call from Connecticut that Angela wasn't doing well," Weisenberg said. "By the time they could drive up there, their daughter was dead."

Weisenberg took the Policastro cause to Albany to get the $500,000 needed to buy land in Suffolk and build Angela's House.

"I begged and I screamed, so to shut me up they gave us the money," Weisenberg said. "We're still exporting our handicapped children out of state, and it's outrageous. We need to bring our children home."

Weisenberg got another $500,000 approved in the state budget to build a second small group home for children. But Policastro and other advocates have not been able to find suitable property to buy, or find anybody to donate the land.

"People are afraid of anybody who's different," Weisenberg said. "They either stare or they can't look. They aren't being antisocial. It's denial, because it's so sad and painful to think about. But just a smile would help. These children may be retarded, but they aren't stupid. They have the same basic needs that every other child has - to be loved, acknowledged and respected."

Angela's House is operated by Independent Group Home Living, a nonprofit agency that has 36 group homes in Suffolk for disabled adults, including a 32-bed nursing home. The funding that supports the children - their medical and social needs and the school programs they attend - comes from Medicaid.

A small group home such as Angela's House saves money, Bob Policastro believes, because larger skilled- nursing institutions cost more per child. Much of the medical equipment and other household accoutrements was donated, thanks in large part to Policastro's quiet bulldog solicitations. Groups and individuals have donated such things as a TV and VCR, furniture, toys, rugs, a backyard play set that includes a wheelchair-accessible swing.

"When it comes to these children, I have no problem letting people know that either these kids or other kids like them at home need help," Policastro said. "There's always another sad story."

Kelly O'Connell's father, Dan, was diagnosed in 1987 with non-Hodgkins lymphoma, cancer of the lymph nodes. He went through chemotherapy, and the cancer is now in remission. Kelly was born brain-damaged in 1990. Five years later, Kelly's mother, Marianne, was diagnosed with leukemia. She was 32 when she died in 1996.

"It's amazing how some people get bombarded with bad stuff," Dan O'Connell, 41, says now. "What happened to us sounds horrible, but then you look at what happened to all those people on Sept. 11. There's always some guy who's worse off than you."

The parents of two of the children in Angela's House have two brain-damaged children. Madison Ludlow's brother, Zachary, and Michael Savoretti's brother, Matthew, live at home. The parents of two other children have separated or divorced.

If parents, for whatever reason, cannot care for their chronically ill child at home, the decision to send the child to a home or an institution - far away or nearby - can cause torturing guilt.

"It rips you apart," Lorraine Boutin said. "You think it's the worst thing you could ever do.

The way I deal with it is that my son needs loving, constant care. My job as his mom is to make sure Johnny has the best of everything. He gets that at Angela's House."

For hundreds of Long Island families, caring at home for children with complex medical needs means dealing with doctors, nurses, insurance companies, social workers, caseworkers, therapists, equipment and supply vendors, wheelchair companies and pharmacists. That can drive some parents to the breaking point.

Lorraine Boutin admits that she was near the breaking point, raising three healthy children and holding her marriage together while caring at home for Johnny: "My husband has a hard time dealing with Johnny. I don't claim to understand it, but that's just the way it is. So, I'm the one who has to deal with everything."

Before Johnny went to live at Angela's House, he was in six different hospitals for surgeries and treatment of various ailments. His mother cared for him at home for five years.

"I would look out the window, and I hated the neighbors across the street," Lorraine Boutin said. "I saw the husband, the wife, the son and the daughter, all outside doing yard work and playing. I hated them for no other reason than they had no clue what was going on inside my house. It's a wonder I didn't go wacko."

When Angela Policastro was born brain-dead, going crazy wasn't even close to what her mother and father were feeling.

"I wanted to die," Angie Policastro said. "Angela was dead and alive at the same time. I thought it would have been better off if I had died, too, so I wouldn't have to live with the pain. It's a constant mourning, but we go on with our lives. We have four other great children. We're happy, we're smiling, but it's forever grief."

At home in Hauppauge, the youngest Policastro child, 5-year-old Vincent, was bored with watching "Rugrats" on TV. He asked again and again when the school buses would bring his sister and two brothers home. Robert, 14, Alyssa, 10, and Joseph, 9, finally arrived. The house got hectic. Backpacks and books got tossed. Giggling got rampant. The refrigerator got raided.

When homework started and things settled down, the parents came back to Angela.