By Mary-Lane Kamberg
When my brother Skipper died at the age of fifty-four, I found comfort in the idea that he now dwelt with our departed parents in “a better place.” Still, some doubt remained. Does any of us really know what happens after death?
When Skipper was born and Mom was still in the hospital, Dad sat us four kids down together. “Skipper isn’t coming home from the hospital,” he said. “The baby needs more care than we can give him.”
“Where’s he going to live?” I asked. I felt empty. I hadn’t even got to see him.
“We found a place where people take care of babies like him.”
Skipper was a change-of-life baby, born in 1963 with Down syndrome that doctors diagnosed as profound. They said he would never walk and was unlikely to live past age fifteen. Knowing how much care Skipper required, doctors recommended placing him in a home that specialized in children with disabilities. At age eighteen, he became a ward of the state.
My mom and dad belonged to the Greatest Generation. They lived through the Great Depression and World War II. And, like many of their pre-rock ‘n’ roll era peers, they adored Frank Sinatra. Dad collected all of his albums and played them every night after work. His favorite Sinatra song was “My Way,” with lyrics that spoke of a full life, and the satisfaction of having done things the way you wanted to.”
Even when the stereo wasn’t playing, Mom hummed the song as she performed daily duties around the house. I liked the song, too, especially after I learned that my teen idol Paul Anka wrote it.
Skipper couldn’t speak. But like our parents, he liked music too. When caregivers took him for car rides, he always motioned to the radio. He liked it loud. Thanks to one African-American woman who took him to church with her, he liked Gospel music, as well as blasting rock ‘n’ roll tunes.
Through the years, our parents visited him and met with doctors and institution staff concerning medical and other decisions. I know they loved him as much as they loved the rest of us kids.
After our father died and Mom aged, my sister Amy and I took over duties as Skipper’s co-guardians. We visited him at the Kansas Neurological Institute (KNI) in Topeka, Kansas, a state-run medical facility. During that time, Amy and I grew close with the staff, especially Trish, the intellectual disabilities specialist who supervised his home.
We attended meetings to evaluate Skipper’s care and health issues. We went along to his doctor and hospital visits for checkups, tests, and treatments. We joined his birthday parties. That was the closest relationship we could have with him. He couldn’t understand the idea of sisters. But I know he recognized me when I visited. I always brought him a little present. And when I walked in, he looked to see where his present was.
Skipper exceeded doctors’ expectations. He not only learned to walk, he ran. He won Special Olympics track ribbons. He lived well beyond his teens. And he lived life his way. Although he couldn’t speak, he had little trouble making his wishes known. His wishes often included a can of soda pop, and he learned to take his own money to the vending machine himself. He went on outings to the zoo, shopping, and movies. He liked to wear aftershave and pick out his own clothes. He liked Hot Wheels and magazines.
Among staff at KNI he gained a reputation for being “ornery.” He walked the long way around his building to take out trash. And if he saw something he wanted in someone else’s room, he went right in and took it.
Sadly, after a two-year battle with leukemia, Skipper died in his own bed. Trish called Amy with the news.
“We’d like to have a memorial service at KNI,” Amy said. “What do we need to do?”
“Don’t worry,” Trish said. “We’ll take care of everything.”
During the service the chaplain introduced a slide show of photos of Skipper during the years he lived at KNI. As the show started, the first words of Frank Sinatra singing “My Way” accompanied the video. I gasped. My throat tightened. The tie to our parents’ love of Sinatra, brought tears. Amy dabbed her eyes.
“Did you tell them to play that?” I asked Amy after the service.
She shook her head. “No. They picked everything.”
I had to know who chose the music. And why.
Trish didn’t know. But she introduced me to the staff member who prepared the slide show.
“What made you choose “My Way”? I asked. “That song has special meaning to our family.”
The woman shrugged. “I don’t know. I’d never heard it before.”
She had Googled “songs for memorials” and found a list of about thirty songs. “I picked two that I knew,” she said. “Then I saw the name Frank Sinatra and thought it would be nice to have something from a different time period.”
Perhaps her choice happened by pure chance. The woman denied having any spiritual experience to guide her. But I think I know why she played it. Mom and Dad sent their love in a special message in music only our family would understand:
We are here with you in spirit. And Skipper is with us.