Turning Passion into Promise to End Duchenne

PPMD is leading the Duchenne Muscular Dystrophy community through its commitment to research, education, advocacy and compassion.

March 19, 2010

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