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Humbly Courageous
Hi, I’m Amy. I live life with a condition called Bethlem Myopathy which is a rare form of Muscular Dystrophy. I like to help others by showing how I live well with a debilitating condition. I was born with this disease, so it’s the only way I know life. I continue to work on embracing myself and using that to help others.

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I Want To Grow Up

Hello and welcome to another week here at Humbly Courageous! I am so glad you stopped by. I hope to continue to be able to spread awareness of what life with a lifelong disability has been like, and still is. My hope is to continue to reach others on some level through vulnerably sharing my experiences. It isn't always easy recounting some of these experiences, but it is certainly worth it when I hear that it is helping others to not feel alone on their journey. This week, I wanted to share a little insight into what things were like as a school aged girl with a physical disability. There were some very painful and lonely times. I survived, and I do think these experiences shaped me into the strong woman I am today. We all know that tough times are oftentimes our greatest teachers in life when we look back on them.

Here is a glimpse of what those hard times were like for me…


First Year of School 

I wanted to grow up in a world where duck duck goose wasn’t a traumatic event every time it was suggested as an activity at school. But I didn’t.

I wanted to grow up where the big colorful parachute they brought out in gym class, that provoked excited squeals from my classmates, didn’t make me want to be swallowed up by the ground, so I didn’t have to go sit on the sidelines to watch and listen to the laughter, left to imagine, what was even going on under there anyway? But I didn’t.

I was always on the outside of this looking in 

I wanted to grow up where I didn’t have to watch as people walked ahead of me didn’t notice they left me behind, as I struggled to walk fast enough to keep up with their leisurely pace, and the awkwardness for us all when they turned around to realize it. But I didn’t. 

I wanted to grow up where I didn’t have to give even a second thought to what kind of shoes I would be able to wear, and just effortlessly slide on whatever shoe I wanted, like all the other girls, not worry about if I could walk, my braces would fit in them, or they would cause me to fall. But I didn’t.

I wanted to grow up where my childhood didn’t include multiple surgeries, constant doctors appointments and time and enjoyment stripped away from my family because of me. But I didn’t. 

I wanted to grow up where I wasn’t stared at constantly and repeatedly asked, “What’s wrong with your legs?” But I didn't.

I wanted to grow up where I didn’t have a constant internal dialogue running in my head telling myself I wasn’t good enough because I was different than everyone around me. That I was lesser than because I “walked funny”. But I didn’t.

I wanted to grow up where I could be spontaneous and not have to plan out every detail of every outing just so I could make it through. But I didn’t.

I wanted to grow up where I could run around carefree and turn cartwheels and try out all of the sports to see what I liked or was good at. But I didn’t. 

I wanted to grow up where I didn’t have dread just getting out of bed everyday knowing the physical hardship I would face each day. But I didn’t. 

I wanted to grow up where I truly believed people were staring at me for reasons other than my awkward gait. But I didn’t. 

I wanted to grow up where I didn’t have to hear the sounds of laughter behind me, as I was mocked for the way I walked. But I didn’t. 

I wanted to grow up where I wasn’t constantly worried I was going to face plant again in front of my classmates. But I didn’t.

I wanted to grow up where I could just “blend in”. But I didn’t.

I could counteract all of these statements with something positive that I’m grateful for. My blessings far outweigh my battles. However, I don’t always want to gloss over the pain and heartbreak that being a person with a disability causes. I want those who are in the midst of their life with a disability, and their families to read this and know they aren’t alone. To know their thoughts are valid and real. It takes humble courage to voice that it is hard. Sometimes we just need to recognize that. Period. 💚


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