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Dear Congenital Muscular Dystrophy,

You came into our world and crushed all our dreams. You changed the way we perceive a lot of things, the way we think about a lot of things. You forced us to alter our definition of “normal.” You made me cry rivers and gave me heartache I didn’t know was possible. Then you broadened my mind, my way of thinking.

Between January and September 2013, I would draw pictures in my mind of my daughter and her soon-to-come sibling holding hands and walking side-by-side, chasing each other around the house, laughing and playing. Then you stormed into our lives unannounced and walked all over my dreams, ripped my heart out and told us you were here to stay. Forever. I didn’t quite grasp that initially and did everything in my power to ignore you, pretend like you were not there staring me in the face all day, every day.

Eventually I guess you grew on me. I learned to accept your presence in our lives and started to see that maybe you weren’t entirely to blame for my misery and distress. Once that happened, you started to gradually alter my perception of my dreams. My daughters still laughed and played and held hands. You showed me it wasn’t you who crushed my dreams — I, in fact, crushed my own dreams when I was ignorant enough to believe that Celine’s entire life depended on bipedal locomotion.

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You shed light on Celine’s incredible mind, her bubbly personality and her sense of humor, which was apparent before she even turned 1. You reminded me that it was the brain that achieved miracles, not the legs. Walking is merely a form of transport, and if her legs can’t transport her, a wheelchair will do the job.

I feel bad for despising you so much initially, CMD. I can’t say I love you or that I don’t wish you would miraculously disappear, but I don’t think your so bad anymore. You’ve only been with us for 18 months, so maybe it takes more time; maybe I need to put in more effort to accept you, but I’m doing everything I can. Maybe over time as Celine achieves more, I’ll build more strength and be able to put in more effort. Maybe. I don’t know…

Sincerely,
Celine’s Mama

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