Parents who lose a child face overwhelming loss with few resources

When Katie Jones died after battling severe cerebral palsy for several years, the national spotlight focused on one specific-and highly controversial-point surrounding her young life.

The 9-year-old Lake County girl’s deteriorating health led her parents, in 2007, to post a “Do Not Resuscitate” order on her wheelchair at school, sparking a very public debate about a very private ordeal. That year, Katie’s school district honored her parents’ decision for DNR orders, obeying the family’s wishes despite public protest.

However, after Katie died on May 23 last year-a Saturday, not a school day-the public spotlight failed to illuminate another specific and controversial point surrounding her death. Katie was a long-time client of a unique hospice designed for children called Hope’s Friends in Barrington.

“In a special-needs child’s life, there is always hope,” says Dawn Lassiter-Brueske, spokeswoman for the Hospice and Palliative Care of Northeastern Illinois, which operates Hope’s Friends. “First, hope for a cure. Then hope for treatment. Then hope for a peaceful death.”

The death of a child with special needs, regardless of age or medical condition, can be more difficult for parents and families who have devoted their lives to the child’s care and contentment, experts say. Yet there are too few support groups and agencies to deal with such special-needs bereavement, they say.

Hope’s Friends is one place that offers free bereavement counseling-either in small group settings or one-on-one-for parents and siblings of children with special needs.

Carrie Alani, manager of Hope’s Friends, insists that hospice care for children isn’t about death. It’s about life, especially the newly emerging field of pediatric palliative care.

“Pediatric palliative care is the art and science of caring for a child and their family with advanced illness, whether it’s cancer, cystic fibrosis or a congenital heart defect,” she says.

Even children with advanced cerebral palsy, such as Katie Jones, are candidates for palliative care, to aid the discomfort that comes with muscle spasms, contractures and seizure activity.

Karen Mangos, of Chicago, lost her 16-year-old son, Dustin, after a long battle with cystic fibrosis. But after his death in 2005, Mangos felt she had nowhere to turn for support that comforted families of kids with special needs.
“So instead I turned to my family and friends, and they were there for me,” Mangos says. “When push came to shove, they understood my pain, my grief and the new void in my life.”

The family of George Mussallem exemplified such empathy and compassion after his death in 2008. It didn’t matter that “King George,” as he jokingly called himself, lived to be 58. It didn’t matter he had obvious mental limitations. It didn’t matter he was born with Down syndrome, typically a life sentence to an institution in that era.

His parents, George and Helen, wouldn’t hear of turning George’s life into a sad story. Instead they raised him at their Gary, Ind., home with his two brothers, Phil and Mike.

George, who also called himself “Gorgeous George,” was the ultimate Cubs fan, a snazzy dresser, a Special Olympian and a clever checkers player, his family says. He enjoyed throwing kisses to people of either sex and didn’t hesitate to express his love with hugs, smiles and loud praise.

When he was happy, everyone knew it. He’d yell “Weeeee-heeeeee!” When he was unhappy, he often spoke of himself in the third person, saying, “George is not very happy right now.”

After George’s funeral, his brothers noted how their pain and grief were healed by those who knew him. George’s friends, they say, served as their de facto support group after his death.

“We had no idea how many people George touched in his life,” Mike says.
Dale Brown had a similar effect in his limited orbit of contact with the outside world. He didn’t grow like other babies, other children, other adults. He barely grew at all.

Dale was born with a severe form of osteogenesis imperfecta, brittle bone disorder. His tiny, deformed legs dangled uselessly from countless broken and mended bones. By the time he turned 10 he had already broken his bones hundreds of times.
For decades, Dale’s quiet but determined father, Donald, carried him around in a makeshift carry cradle. To church, the store, out to eat-he didn’t mind a bit. And along the way, Dale made friends with everyone he met.

“To know Dale was to love Dale,” his mother, JoAnn, says.

Dale lived to be 3 feet tall, 70 pounds and 49 years old. He died Dec. 9, 2006. A doctor told the family that Dale’s loving heart was simply too big for his little body.

“He always felt like he was a burden to us,” Donald says, tearing up. “But he wasn’t, never was, not once.”

At Dale’s funeral, a steady stream of old friends, former teachers and total strangers echoed the same line to his parents: “Thank you for sharing Dale with us.”

This is a common refrain about children with special needs-and also the best grief counseling around, parents say. But if such support is not readily available, agencies such as Hope’s Friends, which covers six counties, offer myriad services.

“Parents who need us are on a horrible emotional and physical roller coaster,” says Alani. “We work to prepare our families for whatever lies ahead. Yes, they have to go through it, but they don’t ever have to do it alone.”