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Chapter 1: a lIfe-DefInIng MoMent Life can change in an instant, and it usually does. – Star Bobatoon, Esq.

ife is filled with certain defining moments, moments we remember forever, moments when something monumental happens. We know our lives are, from that moment on, forever altered. Have you ever had a moment like that? A moment where you knew beyond a shadow of a doubt life would never be the same? You did not know exactly how it would change, but it was clear it would? Whether the issue you’re dealing with is Muscular Dystrophy or Autism or another life-altering disease, I imagine you have had at least one moment that stands out, that stands still — a life-defining moment. Here is one of my life defining moments. It is May 5, 2001. I am home from a long day of classes and studying for final exams in my last year of law school. Dinner is over, the kitchen is clean, and our almost 5-year-old son, Hurricane, is asleep in his room. I am sitting on the couch with my husband, Mark, his arms wrapped around me while we watch something mindless on TV. With the schedule I have been keeping, I can’t remember the last time we just relaxed and held each other. It feels nice. When a commercial comes on Mark raises the remote and puts the TV on mute. “I spoke to Dr. Tangent today,” he says evenly. My body tenses, I am still and quiet. Mark and I have spent the last five months taking Hurricane to countless doctors and specialists trying to find out why he runs slower than the other kids, why he can’t climb the 

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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