Boardman family deals with boy's special needs
By VALERIE BANNER
BOARDMAN -- Every mother hopes her child is born healthy. But, like thousands of other mothers, Christine Miller deals every day with a child who struggles with health problems.
Miller's son Brendan, 2, was born with scarred lungs, clogged intestines, a clubfoot and misshapen hands. Half of Brendan's brain is not correctly developed, so the muscles on the right side of his body are weaker than they should be.
Brendan had a central venous catheter inserted into his chest and a feeding tube inserted into his stomach. The central catheter, which is used to measure pressure in the central veins and to give liquids and medications, was removed when he was 17 months old, but he has a small plastic tube sticking out of his stomach -- where the feeding tube is still inserted twice a day.
He wears a brace on his right leg. He's undergone corrective surgeries and receives physical therapy several days a week.
Routine for family
For Miller and her husband, Deon, who live on Pheasant Court in Boardman, working with Brendan and his special needs are simply a part of their day.
"To me, it's normal," said Miller.
The National Center on Birth Defects and Developmental Disabilities estimates that about 2 percent of American school-age children have a serious developmental disability, such as mental retardation or cerebral palsy, for which they need special education services or supportive care.
As in Brendan's case, the cause of the disability is often unknown. And like Brendan, these children are as familiar with hospitals, doctor's offices and physical therapists' waiting rooms as they are with their own living rooms.
Miller said she spends much of her day running around. "We're not home much."
Although Miller said the running around seems normal to her now, it took some time to understand and adjust to the lifestyle Brendan's needs demanded.
When she first learned about Brendan's health problems the day before he was born, "It was like someone ran a car into a brick wall."
There is no way to fully describe the emotions that pummeled her, she said.
"I don't want to say it was a letdown, but that's how I felt," she said. "Why is this happening to my baby? Why?"
Cheryl Vanatsky, an early intervention specialist at Leonard Kirtz School in Austintown, works every day with families who have a child with a developmental disability.
Often, Vanatsky said, the first thing she has to do with the family is help them grieve.
"They grieve the loss of a healthy, typical child," she said.
Miller said that while she was in the hospital, she saw other infants die. One baby went into cardiac arrest right in front of her.
"I stopped feeling sorry for myself then," she said. "In two weeks, I went from 'I can't believe this is my child' to 'At least I'm holding my child.' Other people can't even have that."
Brendan was born Aug. 26, 1999, and weighed 5 pounds, 12 ounces.
"I didn't know there were any complications until the day before he came," said Miller.
She said everything about her pregnancy was normal until she learned that Brendan had an intestinal blockage.
That was the day her entire life was put on hold.
"It was scary," she said. "I don't even know how to describe it. We weren't sure of anything."
When Miller's husband learned of the complications, he was out of town on business. He caught a red-eye flight back and was with her in time for the delivery.
Brendan was born with a clubfoot and misshapen hands. "His fingers were like this," said Miller, squishing her own fingers together and twisting them on top of each other. He wore braces on his hands for six months to correct them.
He was also born with pulmonary disease -- his lungs were scarred. At first, she said, the doctors thought they were punctured, but they later realized his lungs were "dented."
"It was as if someone had pushed their thumb into Play-Doh," she said, demonstrating.
His intestines were clogged, making it impossible for anything to pass through them, Miller said.
"It looked like a rosary bead, from what I understood," she said.
So the doctors cut out the clogged parts of his intestines and connected the rest of it. Today, Miller said, Brendan's intestines are about one-third the length they are supposed to be, but function correctly.
She said she worried like all mothers about her baby's health. She wondered about Down syndrome, cerebral palsy and muscular dystrophy, but "no one ever thinks about intestinal blockage ruining your child's life," she said.
But Brendan hasn't let it ruin his life.
Although doctors said he'd never walk without a walker and would need intensive speech therapy, Brendan proved them wrong on both counts.
Miller said that when Brendan had his speech tested, she was told he doesn't even qualify for speech therapy because it was normal.
Brendan took his first steps in March and now not only walks, but runs without the aid of walker. He's even learning to ride a tricycle.
"Brendan has an incredible ability of determination," she said. "He sees other kids doing things and he wants to do them. And he doesn't stop until he's doing it."
An ever-loyal little brother, Brendan follows 5-year-old Ryan around, imitating him and trying to be just like him.
"Brendan is where his is today because he sees [Ryan] where he is -- talking and playing," said Miller, as she watched Brendan teeter after his older brother.
For a long time, Brendan wasn't around kids other than Ryan.
"He was never around anyone but me, so he didn't know how to socialize," said Miller.
When she discovered the early intervention program at Leonard Kirtz School, Brendan was able to learn socialization skills.
"The early intervention program just opened up a whole new world to him," she said.
But it opened up a new world to her too. EI provides families with information about what their children are coping with, gives information on where to get financial help and helps keep track of the many doctors and specialists who help Brendan.
Miller said she was grateful for their help. "As a parent brought into a world of so much unknown everything helps," she said.
Miller said that since the world of developmental disability is more familiar to her, life is beginning to return to normal.
She said they are finally able to do the things that were put on hold when Brendan was born. They spent 10 days vacationing in Florida and will soon begin building a new home.
And, Miller said, she's looking forward to spending time alone with her husband when they go to Las Vegas this month. She said this trip has already been postponed twice.
"After two and a half years, we're doing things everyone else is doing," she said. "It's a very normal lifestyle now."