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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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Super mom?

Hello and welcome back, or if you are new here, welcome to Humbly Courageous! My hope is that when you are in the space of this blog you learn something new about what life is like as someone with a lifelong disability. That maybe it opens your eyes to things you never thought of. Did you know you are capable of kicking your own butt, actually knocking yourself out? Turns out you definitely can. I did just that recently.  

It’s not that I didn’t see it coming, I did. I saw it coming for months really. I felt it building. I, of course, knew my son was graduating high school and in the weeks leading up to the final peak, which was the graduation party, there would be many events celebrating his accomplishments. I wasn’t about to miss one single second of seeing all of his hard work come to fruition. In my mind, I could do it all, I could be super mom! I would make everything so special. It’s what I wanted to do. 

A normal day, not sprinkled with extra events, typically pushes me to my physical max. The extra events that pop up cause me a lot of anxiety. I think, can I handle this, how will I do it? In the back of my mind, I was concerned. I was overdue for my stem cell treatment, and was feeling weaker than usual. Not that it gives me superhuman strength or anything, but it does seem to be a boost. I had one scheduled a week before things would get nuts. Seemed like good timing. Everything was under control. I had a plan.

Of course, there started to be cracks in my plan. Unexpected events that popped up. Adding to our busy calendar. I also had to keep my house clean, keep up laundry, make dinner, stock groceries. I had to check on people in my life I care about to make sure they are ok, I had to plan a party, coordinating getting all the most important people in Luke’s life to see him walk across the stage at his graduation, and I had to be a good mom and do all the things for my younger son too. I felt it, the crack was getting bigger. My body was failing. It was pissing me off! My mind always longs to do so much more in a day than my physical body can endure. It’s like a wrestling match every day between my mind and my body. 

I had the stem cell treatment, and from there things didn’t go great. I continued to push the day after the treatment. Not giving my body time to recover and accept the new cells. I was still going full steam ahead. No time to stop. Each day, I felt worse. Weaker. More frustrated. Definitely not in my plan. I forged on. It’s what we do, right? No time for rest. All the people closest to me saw it coming too. I know when they are talking about me haha. They also know there is no stopping me, and that ultimately I will knock myself out. It’s just what I do. The way I’m wired. 

As a mom living with muscular dystrophy it can be difficult mentally too. I want to keep up, and do all of the things, but there are just certain things I can’t physically do. That’s where I get really frustrated, and quite honestly can beat myself up pretty good in that space. A couple recurring thoughts are, will the other moms think I’m lazy, or just perhaps uninterested? Sometimes, I try to explain why I’m not helping with this or that, often to just get a blank stare or silence in return. Did they already know that, is it obvious, or they just don’t know how to respond? Trying to interpret the silence of others is never a good place to go.

 Events like the ones surrounding graduation can really magnify all those little things I’m not able to do physically. Things that a non disabled person doesn’t think twice about doing. In a group setting when people are buzzing around doing things, I often feel invisible, or maybe I just want to be invisible in those moments. 

I got to my breaking point physically and mentally. It all came crashing down just hours before the party. I was panicking. However, I rallied, and it turned out to be a lovely party. I just had to sit most of the time, not walking around greeting guests like I had hoped, but most just came to me, so it worked out fine! I left the party feeling very loved and supported. We had a lot of amazing helpers, and I could clearly see that it is ok to accept help. I know it is. I just want to be able to do what I set out to do as a mom. Be the best mom to my boys that I can possibly be. The truth is, you don’t have to be super mom for your kids to think you are a good mom. I don’t think super mom really even exists! I do know a lot of moms that are super though, that’s for sure. 

Luke’s Grad Party

So, as I humbly courageously stumble forward in this thing called motherhood, with my disability never leaving my side, like a trusty old friend, I can see the good. I can see that my weakness actually pushes me to be better, to do better. I just need to work on that thing called balance. Hopefully, I will get that figured out before Jack graduates in three years, and I do it all over again! 💚





Comments

  1. Since the party have you been able to get benefit from your stem cell? You are so strong hopefully you will be able to recover quickly

    ReplyDelete
  2. Dear friend, I am hoping the same best effort from you in the guest blog post future as well. In fact your creative writing skills has inspired me.

    ReplyDelete

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