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

Recess

Hello and welcome to another week at Humbly Courageous! I’m glad you are here.

Elementary school recess. It should be a great time in a child’s life. Something to look forward to, to help break up the long school day. At least that’s the way it used to be. I also remember my own boys loving the time to go out and run around and get a mental break during their early school years. 

I’m not going to say recess was always a bad time for me, because it wasn’t. There was certainly some fun that was had, but also to be honest, it often gave me a pit in my stomach. Some days were worse than others depending on the activity the masses wanted to do that day. The mental load is so heavy for a child with a disability. There are so many moving parts and things you have to constantly be on top of just to keep it all together. Even at such a young age. It’s a lot. 

Each time I would see the hopscotch design drawn on the pavement, I went into an internal panic. Most of these emotions and insecurities were kept inside my young mind, not shared with anyone. I watched as kids hopped along with ease, careful to avoid the dreaded missteps. I couldn’t even begin to hopscotch correctly. I tried of course, because I wanted to do what the other kids were doing, but I wasn’t able to stand on one leg or hop. Sometimes, kids would tell me I wasn’t doing it right, to which I wanted to scream, “yes, I know”! 


Just the general running around during recess also left me feeling inadequate and left out. I often gravitated to the swings, where I knew I could participate, and feel like I fit in. I couldn’t pump my legs to get as high as the others did, but I still did pretty well. 

One of the pieces of playground equipment was 4 metal chickens with seats that were attached to giant springs. Kids would get on and bounce as hard as they could. I always avoided that, because number one, it was really difficult for me to even get up on, and two, it seemed like something that I could get hurt on easily. Finally, my friends talked me into it and promised to be gentle with their bouncing and helped me climb on. They held true to their promise, and I was having a great time. Until…one of the boys, who was notorious for being the school bully, came up behind me. He decided it would be funny to grab the back of the chicken I was sitting on, and bounce it as hard as he could. I was terrified. It only took a couple of bounces before I went flying and landed hard on my back and hit my head on the concrete below. Pain mixed with humiliation is a terrible combination. I tried my best to not cry because I knew he would only laugh more, but I was really hurt and devastatingly embarrassed. I don’t remember much else, other than he got in trouble. I was carried to the nurse’s office, and I never got on those chickens again. After that, I dreaded recess even more.

Not the exact piece, but very similar 

A couple of years ago, I was driving and happened to be driving by a school where the kids were having recess. What I saw broke my heart. A young girl was parked in her wheelchair under a tree, alone. She sat and watched her peers playing soccer. I just started sobbing. I could feel her loneliness. I wished I could have gone to sit beside her, but I knew I couldn’t. 

I follow a lot of people with disabilities on social media, and also some parents who have children with disabilities. Recently, a parent posted a video of her young son, who lives with Muscular Dystrophy, as he sat and watched his friends play because his school playground was largely mulch, and his wheelchair couldn’t make it through. It was a plea from his mother to the school to somehow make his playground more inclusive. You know her heart was broken into a million pieces watching her son be sidelined due to lack of accessibility. She voiced her concerns to the school, and a few modifications were made, but they weren’t ideal, and certainly didn’t provide the freedom her son should be able to experience during recess. It was a start in the right direction though.

I haven’t had recess for what, 40 years or so? And still, not a lot has changed. Sure, a few playgrounds have become more accessible, but it’s still not the norm. Probably, mostly due to lack of funding and prioritizing.

The point of this post is to raise awareness surrounding recess and the heartbreak it can bring to a child with a disability. If you see something, and can say something, that is always helpful too. Our voices matter and sometimes they do bring about change. 

It took a lot of humble courage to step out onto my playground again after being bullied and getting hurt. Still, all these years later, it’s a very painful memory. I was so fortunate to always have such loving and supportive friends. They were such wonderful treasures in my life.💚

Check out my weekly column “Disability in the City” in The Hamilton County Reporter. https://readthereporter.com/a-rare-life/





Comments

  1. It's great to reach within our hearts and pull out the child in each of us. 🥰👍😁

    ReplyDelete

Post a Comment

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 ...