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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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Change of heart

I met you one year ago. Delivered by a kind stranger with my oldest son by my side, I reluctantly accepted your presence in my home. I felt an overwhelming sadness. I felt like I had given up. I should have tried harder, I thought. Once I was alone for the evening, my family scattered about, I broke down. I documented the day in a tearful and heartfelt video, I have shared with no one. I wanted to remember.

I had thought about this day for years. I fought it, dreaded it and shed rivers full of tears thinking of this day. The day I would need you.

I stared at you, trying to decide if I liked the way I had designed you. I did. You were different, like me.

Little by little, we bonded. Unlike my scooter, you felt like one with me. An extension of my body.


Our first trip together was to New York City not long after you arrived, brand new. Together, we saw so much more than I could have without you.


It is not lost on me that you are not with me all of the time. I still have time on my own two feet. I’m grateful.

You are faithful. Always ready and waiting when I need you.

We have learned together how to transport laundry, cook, vacuum, and carry heavy things that I could never get from one area to another without you. You have allowed me to continue to care for my family. What I love most.


You waited patiently for me at the bottom of the “big hill” when my legs were like jello. Shining like a beacon of hope at the end. Cheering me on. 


We danced our first dance together on the dance floor spinning ‘round and ‘round, even going on a few “joy rides” here and there.


I do not cry about you anymore. I sit proudly in you.


Because of you, I feel freedom, confidence, independence.


You surprised me in the very best way possible.

I knew I needed you long before I asked for you.

You were not something to dread. 

You are a gift.💚

 

 

 

 


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