I am tired. I want to stop struggling to stay afloat in this sea of unknowns and instead gently turn over and try floating on my back for a while. I want to catch my breath. I want to feel the calm. I want to see where it takes me - Living with HIBM


image by: Joshua Frase Foundation supporting Centronuclear and Myotubular Myopathy

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Have a little faith in me…

Faith- it can change a life.

I remember a lot about my childhood, both good and bad. What I don’t remember is ever feeling there was anything I couldn’t do. I thank several amazing adults in my life for this. Today I want to tell you about the best dance teacher in the entire world….so to back up a little let’s go to the year 1987.

I had to crawl up the stairs but when I first saw a ballet on PBS in my parent’s bedroom, I immediately began to imitate the prima ballerina. This I remember vividly. I told my mom I was going to be a ballerina when I grew up. I was maybe five years old and my mom thought a dance class might be good physical therapy.

That dance class…

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Last Updated : Friday, July 17, 2020