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Loving a Child with a Life-Altering Disease

Introduction: I Hate Muscular DystropHy! What we fight, we strengthen; what we resist, persists. – Eckhart Tolle (author, spiritual psychologist)

“I hate muscular dystrophy!” This exclamation has great meaning for me. It had great significance when I cried with my son that day on the Interstate. The statement also has great significance for many of the participants who attend the “I Hate Muscular Dystrophy” workshops I lead for parents and caregivers of children with muscular dystrophy. The statement also resonates for many parents and relatives of children with other life-altering diseases. Those who are raising these unique children, or who are close to them, understand the statement and emphatically agree they too hate Down Syndrome, Autism, Cerebral Palsy, or whatever the name of the affliction that is altering their lives. This statement sheds a thin beam of light into that dark secret place they try to keep to themselves; the place they try to keep hidden. I know that place well. When I said, “I hate muscular dystrophy” aloud that day in the parking lot, it marked the beginning of a shift, an awakening for me. It was the first time I acknowledged how I really felt about the disease and its impact on my son and the rest of my family. It was the first time I admitted to myself how angry and hurt I really was. I had spent years hiding from my true feelings, ignoring the impact this disease had and was continuing to have on my life and my everyday emotions. That was the day I began to heal the soft, fragile part of my broken heart. Often times, when adversity hits, we immediately put on our strong face or our mask. Many of you know that mask well; in fact, you’re probably wearing that mask right now. Quite frankly, sometimes the mask of strength is absolutely necessary. Sometimes wearing that mask and stifling our true emotions is the only way we can get through the day, the hour, or even the moment. That mask 

I Hate Muscular Dystrophy Loving a Child with a Life Altering Disease  

When her 5-year-old son was first diagnosed with Duchene Muscular Dystrophy, the first question Star Bobatoon asked was “Why Me?” Several ye...

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