Mastering Balance Beams: Parenting Children with Muscular Dystrophy

By Joan Fleitas

Have you ever walked on a balance beam? Much like a tight rope, the journey is perilous, with one step cautiously leading the other in an effort to remain stable atop the beam. Despite the winds — despite the narrowness of the beam — despite the distractions from below — the skill can be mastered. With persistence, much support, and an understanding that occasional falls might occur, ‘beam-walkers’ can indeed be successful. Parenting children with muscular dystrophy is much like mastering balance beams.

As parents, we all believe that we should be able to protect our children from harm, socialize them to be exemplary citizens, ensure their perfect health, and craft for them lives where they will surely live ‘happily ever after’. It is as if we perch ourselves on parental thrones when we give them birth. We learn eventually that we are not endowed with such power. When children are diagnosed with muscular dystrophy of any kind, we are given a crash course in humility.

Raising children in the best of circumstances requires that we do a lot of catching up. Just when we think we’ve ‘got it’, when we know how to respond to an infant’s cry, a [...] continue the story

The day our world fell apart

April 9, 2006. That was the day our world fell apart. The day those awful words, “Your daughter has cancer,” were delivered to us.

Our daughter had turned three two days before, and despite her complaining of a backache and a scratchy throat for a couple of weeks, we’d had a great celebratory weekend. We’d been to the pediatrician and urgent care several times with her symptoms, only to be assured that she had pulled a muscle and had seasonal allergies. The day after her birthday party, her symptoms seemed worse and my wife showed up at the pediatrician’s office demanding further tests. She collected me from work on the way to get our daughter’s blood draw and a chest x-ray. I was there when the radiologist came out, face white as a sheet, and told us to go back to the pediatrician immediately. I was there when the pediatrician looked at the x-ray film and went silent, her face the same color as the radiologist’s. I still see those faces three years later.

We were admitted to the local university hospital that night with an emergency CT scan at 2am. The diagnosis came at 7am the next day by a pathology [...] continue the story

You Can Survive Your Child’s Cancer

As a hard-working mom of four, Mary Beth Schied was focused on building a secure future for her family. A kindergarten teacher, and busy mom and cheerleader for her baseball-playing team of youngsters, parenting had taught her about being present for kids 24/7. But most importantly, despite the constant sense of hurry and rush-rush, she felt there was no greater reward in parenting than having happy, active kids.

She and her husband, Chris, weren’t prepared for the detour life was about to throw at them – cancer.

Over Labor Day in September of 2007, the South Side of Chicago couple’s youngest son, Jake, who was not quite two-years-old, started complaining about a scratchy eye. A visit to the eye doctor revealed that Jake had a mass in his left eye. It was cancer. The next 24 hours were a blur. Jake was admitted to the hospital; surgery was scheduled immediately and chemotherapy began. Just one day into the new school year, Mary Beth went on a one-month leave, launching what would become a school year punctuated with frequent absences, while she stayed at her preschooler son’s side through multiple hospitalizations and treatments.

“The principal of my school said ‘whatever you have to do [...] continue the story