Cerebral Palsy, preparing his whole life

Jon Ebersole of Oak Park, Illinois, feels as if he has been preparing for his current career and job his entire life.

“I was raised a Mennonite, which is a very service-oriented faith,” said 48-year-old Ebersole in a telephone interview. “When in college, I was the ‘big brother’ for a kid in a tough situation involved with state services. I believe alcohol and emotional abuse existed in his family.”

He eventually earned a master’s degree in social work. Along the way, he befriended a quadriplegic man, supervised two group homes, and for ten years helped people with chronic mental illness.

“In the early ’90s, my wife and I had twin girls,” said Ebersole. “They were our first children, were born very premature, and they developed cerebral palsy from lack of oxygen at birth. So my walk with disability then became very personal.”

The United Cerebral Palsy website claims more than 750,000 Americans have a degree of cerebral palsy, which is caused by brain damage occurring before, during or shortly after birth. It affects the brain’s ability to control muscle movement and usually doesn’t affect intelligence.

At his daughters’ births, two things about his life changed. One, he felt as if his dreams for his children had been lost. Another was the all-encompassing, around-the-clock impact having two children with disabilities had in every life area.

Today, 17-year-olds Amanda, who uses a wheelchair, and Jessica, who doesn’t, are bright young women who generally feel at peace with their disabilities, said Ebersole.

And he has developed new dreams for his children. “I want them to be happy and independent as they can be,” he said. “I also want them, in some way, to give back and serve others and society.”

In time, Ebersole began a new career. Not long ago, he was promoted to Director of U.S. Field Services with Joni and Friends, a faith-based nonprofit that runs family retreats, takes wheelchairs to people in developing countries, and helps churches welcome and include people with disabilities. He oversees the operations of 22 U.S. offices.

He advised people having a newborn with a disability to begin talking early with a friend or spouse about the loss of their dreams, ask for help if necessary, maintain old friends and add new ones in the “world of disability,” and, if applicable, “take care of that marriage.”