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Your Turn

Loving a Child with a Life-Altering Disease

Do you hate Muscular Dystrophy? Or Autism or Cerebral Palsy or (insert the disease of your choice here)? If so, I invite you to take a moment to express your feelings. Go ahead and say it out loud. You probably said it very softly and very politely, so as not to offend anyone. Did the way you say it accurately express how you really feel? Probably not. I invite you to say it again, this time with feeling. Say it with the full emotion it creates in you. When we acknowledge what hurts, when we face what frightens us, we loosen the hold it has on us and break free – if only just a little bit. So, I invite you to say it now with feeling, “I Hate (your disease or frustration here)!” How do you feel? This is one of the first exercises I do in my workshops. Afterwards, the participants tell me they feel lighter. They feel as though a tremendous weight has been lifted from their shoulders and their hearts just by saying the words out loud, just by acknowledging their true feelings and frustrations. The rest of the workshop has a deeper impact because the healing has begun. While it is important for us to acknowledge our negative feelings, I certainly don’t suggest we remain in that negative space for long. We don’t want the unexpressed, stifled emotions to hold us back. However, we also don’t want the unbridled expression of raw emotion to render us useless and ineffective either. We have too much to do. The objective is to acknowledge how we feel, how we really feel, so the emotion will no longer hold us hostage. Now that we’ve acknowledged some of the uncomfortable emotions, we can begin to freely explore the full spectrum of emotions we have left. I Hate Muscular Dystrophy: Loving a Child with a Life-Altering Disease is partly the story of how muscular dystrophy came into my life, how I have dealt with it and continue to deal with it, and the impact it has had and continues to have on my life and my family. In addition, this book details specific strategies that I have discovered and used, not only to manage my existence with DMD but to create a life of peace, joy and happiness for myself and my children. It is designed to be a resource to help parents manage the emotional and personal 

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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