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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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Dear Disabled Motherhood

Dear Disabled Motherhood,

As a child, I never dreamed being a mother could be my reality. As I got older, I boldly proclaimed I did not want kids every chance I got. 

I was suiting up in an armor of protection, thinking if I told myself that long enough, I would believe it. 

My childhood years spent playing with my dolls pretending to be a mother, but not really believing that would ever by my reality.

Now I know, that was a lie I told myself to soften the blow. I did want kids. I just did not think my body was capable.


God placed a glimmer of hope in my heart, telling me I could be a mom. We trusted that. To this day, I still spend many moments in awe marveling at the ease in which I was able to become pregnant, twice. Nothing ever came easy. I expected pregnancy would not either. What a true blessing that took me by surprise.

What did not come easy was finding information on becoming a disabled mom. The books that were out there had so many things in them that did not apply to the way I have to live my life. 

With no guidebook to lead me, and no one to walk me through it, I forged ahead into the unknown, as I always had. 

It would have been weird to have a guidebook. My whole life I had been feeling through the dark, desperate to find some familiarity.

Along with the absence of guidance for my unique circumstance, a new fear was born. A new doubt born along with that fear, like twins. 

The what ifs swirled through my head, not unlike my other friends becoming mothers, but they were different what ifs. Uncharted what ifs. If I spoke them out loud no one would get it. I became full to the brim with what ifs, with no where for them to go.  

Even my doctor didn’t have answers to calm my doubting fears, only a frustrated compassion. She knew no one like me. A phrase I have heard more times than I can count. “I’ve never met anyone like you!” Those are not comforting words to hear from a physician. 

From an outsider looking in, it was easy to assume that my life would not be easy taking on the challenge of motherhood, while navigating such an all encompassing disease. I wonder how many whispered their doubt in me? 

Motherhood took me on an uphill climb, as it does all mothers. It is a mysteriously rewarding mix of hardship and triumph, heart-bursting and heartbreaking. Each having their way with our hearts. 

What I never saw coming was the strength that motherhood would build inside of me. Although my muscles got weaker, my spirit was infused with a strength I could never have imagined. The depths at which I pushed myself each day raising my little guys, often left me feeling stunned. In a good way.

There was no other option than to go, to fight, to push. I would have done anything for those babies. My boys.

At times, the harsh reality of my lack of physical abilities to do common motherly things felt like my heart was being ripped out of my chest. The anguish I felt from not being able to pick my babies up and carry them around, or do a quick trip into a store, or plan an outing to the zoo on the fly, to name a few. Those were the quiet moments of unimaginable emotional pain, I told no one about.

Much of our lives together, I spent endless hours planning ahead for how I would map out even the simplest parts of our days. Not like others I knew. My planning was complex. That is not a brag, just the truth. To another mother’s one step process mine was ten.

I tossed and turned at night, wondering if I could really do this. Constantly going through the next day in my mind. 

As I look back on those days, preparing to send my baby boy to college, I am slammed with deep emotions at every turn. A carousel of beautiful memories plays in my mind these days. 

I think of how proud little Amy playing with her dolls would be if she could see me today. 

I am reminded that all things are possible with God. 

I am finding strength to “let go” and enjoy this next phase of motherhood. Staying in constant gratitude for the wonderful time my husband and I have had at home with our boys. 

Thank you disabled motherhood. You are a stunning portrayal of humble courage.

Forever grateful,

Amy



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