Self-help Articles

by Marly Cornell

A few months before Cody’s second birthday, Tad and I received an invitation from the Pediatric Society of Jefferson Medical School to be a part of an informal discussion with professors, medical students, and parents of children with birth defects. The goal was an interchange to help future pediatricians go “beyond the textbook” to educate and acquaint themselves with the “dilemmas, hardships, joys, and realities” of treating children with disabilities. The letter noted that frequently the pediatrician is of little help to the parents, and only the parent of such a child can communicate the impact of the situation. The gathering was the brainchild of Dr. Gary Carpenter in the pediatrics department. I admired him already for the care he’d directed for Cody, and felt another kinship in that he was a watercolor painter.

Since Cody’s birth with spina bifida, we’d dealt with plenty of medical professionals. Tad and I found it refreshing to be asked for our opinions. We agreed to participate.

Twenty-four people sat around a large conference table in the Alumnae Hall at the medical school on a Wednesday evening. Introductions were made and the goal was restated. Medical students and physicians were to listen. Parents were asked to describe life with their children.
One seven-year-old required medication that only partially controlled grand mal seizures that occurred several times each day. He wore a helmet to protect his head during seizures. He might collapse anywhere for several minutes, his arms and legs flailing. Sometimes he bit his tongue. This family was on constant alert.
Another family had a child with “severe mental retardation.” She couldn’t speak or care for herself and would have abilities of an infant all her life. Some of Tad’s students were the adult versions of this child. The parents worried about their daughter’s future. Who would care for her after they died?

A mother described her twelve-year-old son who was born blind and without legs. I found myself feeling grateful that Cody could see and speak. The more these parents spoke, the more grateful I felt.

After hearing from each family, including our own story, group members shared their reactions. Physicians expressed gratitude for the valuable information; medical students expressed awe at the magnitude of responsibility shouldered by the parents. Every parent felt the way I did. We were grateful to have our own circumstances instead of any of those others.The mother of the child with the seizure disorder said, “I’m so glad my child can walk. I can’t imagine how hard his life would be in a wheelchair.”

I thought, at least Cody has legs; she can see, hear, talk, and laugh. I don’t have to worry when she’s out of my sight that she might collapse and swallow her tongue.

Dr. Carpenter summarized the view that clinicians must respect and listen to parents, the true experts who care for their kids day to day. Parents know their own children far better than a doctor who meets them for arranged appointments or during hospital emergencies. He said to never forget this. I left the gathering feeling validated, respected—and wishing all physicians were like Dr. Carpenter. ~ Excerpted with permission from The Able Life of Cody Jane by Marly Cornell

About the Author:

Marly Cornell is an artist, writer, and book editor. She wrote The Able Life of Cody Jane, to show how “regular” people deal with disabilities and/or chronic illness—and, like anyone else, can have joy, romance, fun, and an independent life.Follow The Able Life of Cody Jane on Facebook. See www.theablelife.com for more information about The Able Life of Cody Jane, published by LightaLight Pubications.