Skip to main content

About Me

My photo
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.

Followers

Sweet Summertime

Hello and welcome back, or if it’s your first time to Humbly Courageous, I’m glad you are here! Living in Indiana most of my life, aside from a 5 year wonderful hiatus in Memphis , TN, I am very accustomed to the 4 distinct seasons. There is something to love about each one if you ask me, but one in particular stirs up a lot of anxiety in me. Yes, it’s true. Summer causes me a lot of anxiety. 

It’s not that I hate sunshine and warmer temperatures. Quite the opposite. I love the beauty and feeling of summer. It’s magical! The sunsets, butterflies, fireflies, blue skies and lush green trees. 


The reason for the increase in anxiety is pretty simple. With summertime, comes a big increase in physical activity. When the boys were younger and in school, we had a routine. My body got used to the demands, and it was manageable because I knew what to expect, and how things would work for the most part each day. As summer break approached, I would hear other moms excitedly talking about how they couldn’t wait for summer, and all of the things they would do with their kids. It’s physical, and often spontaneous. Parks, pools, trips to the zoo, they couldn’t wait to fill their calendars with all these fun things the kids were sure to enjoy. The pit in my stomach grew. How would I keep up? I wanted my kids to experience all of these things too of course, and I wanted to experience it with them!


It wasn’t just the activities, but also more physical demands because they were at home more. More meals to be made, messes to be cleaned up, more entertaining so they wouldn’t argue constantly, or die of boredom haha! I felt so guilty having these feelings because that time with your children is a gift. Now that Luke is graduating soon I’m feeling that more than ever. It just passes in the blink of an eye. Truly.

Summertime, of course always came, and we always figured it out. Whether it meant I had to have help doing these things with my boys, or sometimes they would join a friend, we made sure they always got to experience all that summer has to offer. I was working 3 days a week, so the two days I was home with them, and the weekends, I knew would be full of physical activity. Being open and honest with my boys as they were old enough to understand, made things a little easier. I explained that it was hard for my body to adjust to the increased physical demands, but that I would do my best. That doesn’t mean things were always smooth, and it wasn’t always easy to adapt. 

One way I react when my body starts to shut down is that I get irritable. I think it’s because I’m scared. It’s a really scary feeling when you feel your muscles failing you, and just won’t cooperate. You never really get used to that feeling.  Just to be clear, it’s not sore muscles from overdoing it that I’m referring to. This is different, and unless you’ve experienced it, it’s hard to explain. Just last weekend, this very thing happened. With summertime also comes the need for lots of yard work. Luckily, my husband has a true love for all things yard related. However, it brings feelings of inadequacy and guilt because I can’t really help much in that area. I always give it a go each year. This year, I overdid it and ended up really angry and frustrated because it put me out of commission for several days. I pushed too hard, and eventually he had to carry me to bed. I knew it when I was doing it. Sometimes, it’s hard to choose between the two. Having fun, getting things done that need to be checked off the list, or having to be in recovery mode for several days. I’m a doer, so I often make the choice to do now, pay later! I love the feeling of accomplishing tasks. It calms me.

All of that being said, we always figured it out. We always had fun and memorable summers. Pool time at Neenee and Papas with family and friends, sleepovers, camping trips, family reunions and track meets galore. I loved all of it. Humbly courageously, walking head on into situations that produce anxiety is just a part of life. There is almost always a way to figure things out, and make them work. If you forget that, then just remind yourself of that. That’s what I’m doing again, as school is about to be over. Luke’s last summer at home before he’s a college student, and Jack’s last summer without his drivers license. I’m going to soak it up, and do my best to keep up! 💚

 



Comments

Popular posts from this blog

Dear Muscular Dystrophy

A letter to Muscular Dystrophy on the eve of my 49th birthday. This has been a lifelong journey…. Dear Muscular Dystrophy, At times you dazzle me, showing me the heights of human love and kindness, and at other times you take me to the deepest, darkest parts of my soul. I have silently pleaded, please just let this end. I don’t want to do this anymore. I’d like to say that was a one-time thought, but you’ve made it impossible to tell that as a truth.  I want to love you because you are a part of me, but you make it so hard at times. You feel like a best friend when I achieve feats that seem impossible due to my physical weakness, but also you feel like my worst enemy living inside of my body when you fail me, and I’m once again lying on the floor. You robbed me of big chunks of childhood joy, while I sat in silent envy of my friends, as I watched them effortlessly turn cartwheels, run and jump.  You are stuck to me like glue during the countless hours in waiting rooms, operati...

In Luke’s words

Hello, welcome back to another week at Humbly Courageous. I am glad you are here! When my oldest son asked me to proofread his college essay a few years ago, I don’t think anything could have prepared me for what I would read. My biggest fear before having children, was that my life, my disability, would affect their lives in a negative way. I know what I endure as a disabled person on a regular basis, and for years I debated if I wanted to bring children into the world with me and potentially affect their lives in a bad way. After years of discussion with my husband, I finally felt like the decision was clear. I feel God put it on my heart, that He wanted me to have children. I felt that very strongly all of a sudden. As I went on the journey that Luke took me through in this essay, I felt many different emotions. I felt sad, mad, grateful, proud and so much more. I am sad/mad that the opinions and reactions of others caused us to miss out on these precious times with Luke. That part ...

Deep Breath

Hello and welcome back, or if you are new here welcome!…..Deep breath this week, as we are diving into the emotional trauma of 47 years disabled… here we go with just a few examples. Sharing these are really hard for me, but I think it’s important to share because these things are not uncommon for those who are disabled. Some I’ve shared before, some I haven’t.  “Yeah, from the look of your profile picture you really look disabled 😂” There is SO much I could say to this. What does that mean? Am I supposed to look a certain way as a disabled woman? Please, enlighten me. I’m all ears.  Or how about the folks that left me on the floor of a bar/restaurant because they assumed I was drunk because I fell as I was exiting because the door swung the opposite of what I was expecting, so easily throwing me off balance. Had not had a drop to drink. Left me there, staring at me as if I was a zoo exhibit.  Even the manager came by and told me to move because I was letting all of the ...