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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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Senior Year

Hello and welcome back, or if you are here for the first time, welcome! As my oldest son approaches the end of his senior year, I find myself feeling a wide range of emotions from, oh my gosh I’m so proud of him, to oh my gosh he’s leaving home soon, and then the tears start falling. I’m not really surprised by these emotions because I’ve witnessed many moms I’m close to go through this already. Hearing about it and feeling it are two very different things! My mom was telling me she was sad too, but then she said, while it is sad, this is what you’ve been doing all this time as his mom. Preparing him and equipping him to leave and be a successful individual of society. She, as she usually is, was exactly right. 

After that conversation, I had a lot of memories of my senior year surface. The second half of my senior year was actually a really difficult time for me. I doubt I was shedding much light on how difficult it really was for me to my friends, and probably not even my family. I liked to stuff those feelings away, and also had a lot of feelings I didn’t even really understand myself. 

In February of 1992, I had to have a major ankle surgery called a triple arthrodesis, or in simpler terms, a fusion of my ankle. This surgery is no joke, and made my previous ankle surgeries pale in comparison to the pain. The procedure requires taking bone from the hip area and then fusing that bone into the ankle to make it more stable. The muscles in my ankle were not strong enough to hold it up, and my foot was really caved in making walking hard and painful.  I had talked at length with my surgeon, and he mentally prepared me the best he could. He knew my goal was to be able to go to my senior prom (he even offered to take me if I didn’t have a date), and he also knew that my ultimate goal was to walk across the stage at my high school graduation. The recovery period is at least 3 months, and the pain really persists for years after, I later found out. It makes sense, as they are installing hardware into your foot that’s not really meant to be there. It was a really tight timeline to achieve these goals, and on top of that I was managing my disability and trying to finish high school, preparing for college. It was a lot, physically and mentally. 

I wasn’t prepared for the pain that I experienced after the surgery. It was off the charts, and I thought of myself as having a high tolerance to pain since I had been through so many surgeries. The intensity of this pain was overwhelming as soon as I opened my eyes after the surgery was over. I stayed for about a week in the hospital, healing and relearning how to use crutches, as I couldn’t put weight on it for 6-8 weeks. I also often used a wheelchair during that time because using crutches takes a lot of arm strength, and the muscles in my arms are also affected by my MD. The days and weeks following were tough, but I had goals to accomplish! 

I’ve talked about this surgery in past blog posts, and I’ve mentioned the true heroes at this time were my friends who stepped up in a big way to help me reach my goals. They did this by supporting me and assisting me at school physically. They also were really good at making me laugh, which helped immensely!


After 2 months in a cast, I graduated to the boot. My prom dress was carefully planned to match my walking boot.😊 Graduation after prom was approaching quickly, and it was down to the wire, as in the day before, that I was able to ditch the boot and wear a regular shoe. That was a wonderful feeling! It’s also a very foreign feeling after not wearing a shoe for so many months. It takes some time to get used to walking again with a normal shoe on, coupled with Muscular Dystrophy that already made walking very difficult. I had about 24 hours to get used to the new sensation, plus my foot was completely different than it was before. Because it was fused, it no longer bent in certain directions. You quickly learn how it can and can’t move, because the pain of trying to make it go in a direction it not longer can is awful!

Graduation night came, and while a lot of girls were wearing heels, I couldn’t. I had fresh new scars I was sporting, so to match those, I picked the funkiest shoes I could find (after all I had just been voted best dressed by my classmates 😁)  I walked, unassisted, into that night feeling a little unsteady, but proud of myself that I had worked so hard to achieve that goal. Months of PT went into the walk across that stage. However, as we stood lined up in the cafeteria, I started doubting myself as to if I could really handle it. I was standing next to a guy who was an acquaintance, but that I didn’t really know well. He leaned over and said, “those are some really amazing shoes you are wearing, best shoes I’ve ever seen!” Somehow, him saying that right before we walked out, gave me the confidence I needed to get into the gym and walk across the stage when they called my name. He will never know the effect his comment had on me. 

It took humble courage and a lot of blood, sweat and tears to walk across the stage at my high school graduation. As I prepare to watch my son walk across the stage for his high school graduation, I hope that he too feels proud of the humble courage it has taken him to get there. I hope I’ve instilled in him to set big goals, and not be afraid to try. Even if you don’t succeed, you tried, you did your best. Life’s moments are best lived in what we do, not what we don’t do. 💚



Comments

  1. You are amazing and you sons are better humans because of you and Jamie

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