I HATE MUSCULAR DYSTROPHY –
Loving a Child with a Life-Altering Disease
stairs without holding on, and why he falls so often. Four weeks ago Hurricane had a muscle biopsy to determine if he has muscular dystrophy, a degenerative muscular disorder that causes the muscles to grow weaker as a child grows older. It is an aggressive, debilitating disease for which there is yet no known cure. Dr. Tangent, a pediatric neurologist at UCLA, told us she would come to our house with the results if there was anything to be concerned about. Not knowing if Mark is waiting for some response from me, I remain frozen, unable to speak or move. In a deafeningly loud moment of silence, I feel him tighten his arms around me. My husband is my ultimate protector. For the 13 years we have been together, he has kept me grounded. While I am emotional and excitable, he is calm and measured. While I am jumping off the side of a building without preparation in pursuit of a new idea or a dream, he is busy tying a rope to my ankle so I don’t hurt myself. My calm, grounded husband tightens his arms around me and says . . . “Dr. Tangent’s coming over tomorrow morning at 9 a.m.” Immediately, I begin thrashing about trying to break free. I want to run, run away from him, run away from this moment. At the same time I am screaming, “No, No. I don’t want her to come here. I don’t want her in my house. I won’t let her in.” I am screaming and crying and trying with all my might to pull away from him. Mark holds on to me and will not let me go. Eventually, I stop struggling, I stop screaming, and I stop cursing. Did I mention I was cursing? When Mark finally releases me, I turn to look into his eyes. His arms are strong around me; he holds me and will not let me go, but his eyes… I have looked into Mark’s eyes countless times before. When I need strength, when I need comfort, I look into Mark’s eyes and that assurance, that comfort, is always there. Now I only see pain and
Published on Jun 7, 2011
When her 5-year-old son was first diagnosed with Duchene Muscular Dystrophy, the first question Star Bobatoon asked was “Why Me?” Several ye...