I am a mom of a child with cmt….

When I read the following post, I identified with the adjustments we make when first diagnosed with a chronic illness. Her storytelling skills will draw you into her experience. Hope you enjoy it as much as I did.

disability advocate, 50something mom of two, my son has charcot marie tooth disease

I have never heard of charcot marie tooth until my son was diagnosed with it approximately  ten years ago. I always knew something was “wrong”. He was clumsy and fell often but i thought he was just growing into himself. One day in second grade, his teacher called me. She was screaming at me and asking me what is “wrong with your son?” “Doesn’t he realize he walks into everybody?” “I can’t have this in my class”. She basically went on a screaming tirade about my son. I hung up both so angry at her words and they way she spoke about my son that I wanted to just march up to the school and get her fired and then kick her ass. But I didn’t. I took a few deep breaths and remained calm. After a ton of research I had him tested at a local hospital. They did a myriad…

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Rose Wolfe (Living Free with disAbilities)

Let's get to the elephant first: I have myotonic dystrophy which defines my physical limitations, but it does not define me. Without the distraction of physical activities, I have found my passions: (1) Encouraging others to live more fully with fun, faith, and hope; (2) finding freedom in oil painting; (3) writing about my experiences; and (4) encouraging others to live more passionately. It is my belief that every person lives with at least one disability - for impairments are not limited to those with chronic illnesses. Many neurotypical people are psychological architects who have constructed enclosures in which they trap themselves. Mindsets, attitudes, and perceptions are fluid realities. Many of us have forgotten that it is possible how to live beyond our disabilities. Life may have challenges but faith and hope are within reach. I have made my choice: I am LivingFreeWithdisAbilities.

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