Humbly Courageous

Hello and welcome back, or if you are new here, welcome! If you’ve been around and read a few of my blog posts, you likely know that it took me 44 years to get my diagnosis of Bethlem Myopathy, a form muscular dystrophy. I could look at those 44 years as a lot of wasted time. There was a lot of wasted time, money spent, seeing all kinds of doctors, all over the place. Or, I can reflect on that 44 years and look at all of the important life skills I learned in the waiting. The truth is, there is often pain and struggle in the waiting. There is a lot we can learn from our most difficult moments. After all, we are usually a captive audience to our pain in life.  Patience is the first life skill that comes to mind. I wonder how many hours it would total up if I could add up all the hours spent waiting on doctors, or test results, or for my body to heal after surgeries? A lot of waiting that was out of my control. Patience with new doctors, explaining my symptoms over and over and over....

Hello and welcome back! As I've mentioned before, my husband is my "editor in chief" as I jokingly like to call him. Really, he just reads through what I've written to make sure there aren't any glaring typos or grammatical errors (which there usually are!), but he doesn't change the context of what I've written. It can be a bit of a challenge sometimes because he is a civil engineer, and the way I write is like the way I talk. It's just what makes sense to me. As an engineer, he thinks it could be written a little differently. Far more formal and precise than I am. I am the polar opposite of an engineer, whatever that is called! I don't really have a mathematical bone in my body, and honestly that used to make me feel inadequate, not as smart. When my boys came along, and I realized that they, like their dad, are also math wizards, I started to see that really it didn't mean I wasn't smart, it just meant that I learn in a different way. Th...

Hello and welcome back! Body image, I guess I'm going to tackle this one today. Not an easy topic for me, but here we go! As a person who has lived in a disabled body her whole life, there has been some major struggles with body image. As an elementary student, I was always self conscious of my braces and my ever increasing scars. At that time it wasn't as much about my actual body, as it was just a feeling of being different from all of the other girls. I was envious of how fast they could run, or how they could jump and just seemingly do everything with ease. They would turn cartwheels like it was the easiest thing in the world. It looked effortless. I wanted strong legs, but my legs had braces, or I was often wearing casts from surgeries. I did what I could though, and kept up to a certain degree.  Still have one of my first sets of braces  As I got to middle school, I started to become more aware of my body, my size, my scars. I have a 3 inch scar on my left thigh. I hated...

Hello and welcome back! When I got the call asking me if I would be interested in interviewing for the MDA’s National Ambassador program, it stunned me. For one, it is obviously such a once in a lifetime incredible opportunity, but also just 10 minutes before that call, I had written down (for the third year in a row) “become National Ambassador for MDA” as one of my big lifetime goals. I got emotional because it was all just crazy how it happened that way. I was kind of looking around to make sure I wasn’t being pranked, haha!  When I was younger, my mom had a friend who was connected with the Easter Seal Society. She told my mom she thought I would be a great representative for the Easter Seals. When I was 8 years old, I went on to become the Easter Seal child for the county I lived in for one year, and then was chosen as the state representative for two consecutive years. I loved my time with the Easter Seals. It gave me confidence, and also I liked that I felt like I was helpin...