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Loving a Child with a Life-Altering Disease

Sharing Your Defining Moment

In a workshop environment, with parents and caregivers who have just recently received the diagnosis and with those who have spent some time living with the diagnosis, we share this moment early on. The act of sharing this very intimate moment is extremely powerful and liberating. It unites everyone in the room in a special way because we can all relate; we all have our own similar but different stories. In sharing our stories, we create a safe place in which to look at and acknowledge the emotions we would otherwise run from — the emotions that haunt us. When we share our stories, get them out of our minds, talk about them, cry about them, we take a significant step in loosening the hold those emotions have over us. As we loosen the restrictive hold of those emotions, they no longer hold us hostage. We begin to heal as we open our hearts to access the joy available to us. What was your defining moment? Do you recall the exact moment when you realized your life would not be the same? Now, I understand how hard that moment might have been to live through the first time, and you may not want to go back to that defining moment, much less share it with others. These defining moments can be so raw, so emotional, and so private that some people even hide them from themselves. However, the ability to pinpoint that moment and share it is a way to start healing. We need to heal ourselves so that we can better enjoy our lives and be better caregivers for our children. Would you be willing you share your defining moment?

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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