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

I am a caregiver of someone with MS

By Kent Pollard

I think that part and parcel of coming to terms with becoming a caregiver, is acknowledging that there is going to be change, change that will almost always be difficult at the start. Change that we have to accommodate and embrace if we are going to have the best life we are capable of having.

My wife, Victoria was diagnosed with MS on October 5th of 1998, three days after I started a new job. At the time, caregiving didn’t even enter into my experience. We were a couple and there were things that we did for each other, none of them out of the ordinary. For the first 4 or 5 years after the diagnosis, caregiving was a minor, and completely unrecognized, part of my life. Victoria experienced unusual fatigue, and we worked through some initial anger and bitterness toward the world, but she continued to work and our lives were, or at least, my life was, not particularly disrupted. However, the disease state progressed, slowly but inexorably until about four years later when it, and the accompanying symptoms had become much more pronounced and began to creep into our day-to-day lives. Victoria was more tired than ever. [...] continue the story

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