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A LOVE BEYOND HOPE; Caring for a severely disabled child means surviving a weighty moment of truth: the realization that things will never get better.


WILMINGTON, Del. -- Nineteen years.

Let that number hang in the air.

Jamie Riordan is 19. Her mother, 49-year-old Bernadette Riordan, has been caring for her daughter, by herself, since the girl's troubled birth. Lou Ann Jasper, one of the family's nurses, comes daily for eight hours at Riordan's Perry Hall home. Other than that relief work, it's Riordan living alone with Jamie, who has severe cerebral palsy.

Nineteen years.

The same amount of time in which many parents raise and separate from their healthy children, who have become self-sufficient young adults. That's how long one mother has cared for her one severely disabled child. And it's roughly double the length of time many parents spend caring for their severely disabled children before they place them in group homes or other facilities, authorities say.

"You simply wear out," says Dr. Freeman Miller, co-director of the Cerebral Palsy Program at the Alfred I. duPont Hospital for Children in Wilmington. In these severe cases, "few families are going to treat their children until they die."

This week, the Riordans were at duPont Hospital to see Dr. Miller. Bernadette has brought Jamie here often to be treated and to undergo surgeries to free her limbs of rigidity, a common characteristic of spastic cerebral palsy. Jamie is just one of 3,000 patients of Dr. Miller. Another is Steven Kelso, a 10-year-old Pennsylvania boy whose story shocked and irked so many people this holiday season. How could his parents have done this?

Steven, who is also medically dependent with severe cerebral palsy, was left at the hospital by his parents. Richard Kelso, president of a $500-a-million-year company, and his wife, Dawn, a public advocate for disabled children, wheeled their son into the hospital's emergency room and asked that he be admitted.

When the hospital receptionist returned with a nurse, the Kelsos were gone. They left boxes containing Steven's clothing, toys and medicine. They also left a note saying they could not care for the boy anymore. It was the day after Christmas.

The Kelsos have been charged with child abandonment and conspiracy; their trial is scheduled for March. Monday of this week, they told a Family Court judge in Delaware that it's in the best interest of Steven that he remain in temporary state custody. He remains, for now, at duPont Hospital.

The Kelsos had cared for Steven for 10 years. Then, for reasons known only to them, perhaps to friends, they decided to leave his temporary care to familiar others, the doctors and staff at duPont.

Because of the legal proceedings against the parents, Dr. Miller could not discuss Steven's case. But he did talk this week about the emotional toll on parents of severely disabled children, about an emotional arc of time that might span 19 years, or 10 years, or maybe six weeks: the time it takes to realize your child will not get better, just older. The time it takes some parents to realize they can't do it anymore. Or the time it took Bernadette Riordan to realize she is in this for life.

"I pray," Riordan says, "that God will take Jamie five minutes before me."

Small successes

"She just started kicking her feet last week. We call them happy feet," Riordan says in a waiting room at duPont Hospital, which has served as a pediatric teaching hospital since 1940. Occupied by stuffed teddy bears larger than many of the children in this wing, the waiting room is two doors down from Dr. Miller's office.

He hugs Jamie and gives her an animated smile and hello. Jamie cannot speak and is nearly blind, but she reacts to her doctor's voice and touch. Her eyes brighten, the corners of her mouth skip up. On Jamie's wheelchair, a cassette player mounted behind her nearly immobile head plays music from "The Sound of Music." Milky liquid food crawls through a tube into her flat, pale stomach.

New scars on the young woman's hands point to where Dr. Miller recently operated to relieve the rigidity. Jamie's hands move better now, her mother says. And she's been kicking. These are this week's highlights in a lifetime of near-death experiences (recurring pneumonia), countless prescriptions, seizures and, at times, moments of success:

Jamie able to be on her belly on the bed and not in her wheelchair or prone board all the time.

Jamie (The Jaimster, Jaime, Peaches, Boo-Boo) perking up every time she hears that one part in the "Wizard of Oz" when Dorothy's bed twirls inside the twister before smacking down.

Jamie, somehow, entertained by Disney videos.

Notice how those accomplishments and pleasures -- being on her belly, smiling to a video -- are all typical moments in the life of a young healthy child. Parents revel in and record each development and they expect changes in behavior. Natural progress is anticipated. A child will learn to talk and walk and feed himself and use the toilet and make his parents laugh at his first jokes.

At this stage, parents of healthy children and parents of severely disabled children share the same emotional space.

"You have great enthusiasm in the beginning," Dr. Miller says of the countless parents (mothers, typically) of newborn children who have cerebral palsy. The first six weeks are hard work but joyous. Your support system of baby sitters and grandparents is mobilized. Your child sleeps through the night, and you get your first real rest. You start having hope for what will happen next. You dream dreams of your child's future. Lawyer? Vet? Teacher?

"Typically, the parents do pretty well in the first five years," Dr. Miller says.

Facing the realities

But then many parents of severely disabled children hit the wall -- the years between 5 and 10. The child, heavier now, still needs to be carried and lugged in and out of bathtubs and wheelchairs. They still need diapering. The child is fed though a G-tube into his stomach. "It becomes clear that something is seriously wrong," Dr. Miller says.

"How am I going to get her to 6 years old? ... How am I going to get her 10?" Bernadette Riordan remembers asking herself. "Oh Lord, how am I going to get her to adolescence?"

By this time, the parents' support system has typically collapsed. "Baby sitting runs dry," as Dr. Miller says. The child is becoming adult-sized; puberty approaches. The child now might be 100 pounds (Jamie's weight) and the labor of hoisting and carrying the child is harder. If parents can afford it, nurses work shifts in the household. They provide crucial help, but still it's strangers living in your home.

Stress on a marriage can become insurmountable. There's a very high number of divorces, Dr. Miller says. In a familiar scenario, one spouse decides to keep the child; the other spouse decides it's best for the child to be in a group home. "Then one spouse hits the road," Dr. Miller says.

Riordan and her husband divorced. Her father still lives near them. "He loves Jamie very much," Riordan says.

Imagining the stress in households like these would be mere guesswork.

Stress relief, in Riordan's case, comes in a surprising form: Ice hockey.

The 49-year-old woman plays ice hockey in a women's league at Patterson Park. On Friday nights in-season, Riordan plays defense and left wing for the Patterson Park Penguins. "It's a non-checking league, but sometimes we do anyway."

One could see where checking an opponent up against the glass, or scoring a particularly great assist (as Riordan did a few weeks back), could relieve stress, make one temporarily forget about the demands of a disabled child. But it's only a distraction -- a damn fun one, though.

'Death of hope'

By age 10 -- the age of Steven Kelso -- children with severe cerebral palsy hit their own wall.

If the child isn't walking by that age, he will never be an independent walker. If the child has not learned to verbally communicate or to recognize words, he will never learn to, according to "Cerebral Palsy: A Complete Guide for Caregiving (Johns Hopkins Press Health). For these children, doctor visits and surgeries serve only to maintain life functions or improve mobility. There is no getting better.

Accepting your child in this permanent state of mind and body is perhaps the hardest hurdle, authorities say. Your child will not become a lawyer, vet or teacher. Life can be relatively easier for those parents who don't expect much if any progress or change in their child. And these parents often come more middle-class, more blue-collar.

"They sometimes manage the very best. They have accepted who their child is," Dr. Miller says. It has to be hard. "It has to be the death of hope."

Having money doesn't cure anything. In fact, having economic stature doesn't automatically make caring for a disabled child any easier. Parental expectations can be too high, and the reality too much.

"I always say," Dr. Miller says, "the families who really struggle come in here with two legal briefcases in their hands."

Bernadette Riordan doesn't harbor high expectations for her daughter. She's too experienced for that. If she can keep Jamie's muscles from tightening their grip, if she can keep pneumonia at bay, if she can keep Jamie's bangs trimmed nicely and her teeth flossed and clean, if she can keep her daughter smiling at "The Wizard of Oz," and if mom can occasionally score on the ice, then this will have to be enough.

Nineteen years.

In all that time, what, Bernadette Riordan is asked, has she sacrificed?

"My life."

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