I don’t have skeletons in my closet, but I am carrying an extra one around with me.

My body is essentially growing a second skeleton and guess what? I really don’t care, I am thankful.

When I was five years old, I was diagnosed with FOP, the debilitating disease that is causing my muscle, tendons, ligaments and bone to turn into more bone- which means- you guessed it, I’m growing a second skeleton. Being a clueless five-year-old, I didn’t know exactly what that meant, but I knew I had to figure out a different way to live my carefree life a little differently, and I did, quickly. I didn’t know that I was one in two million diagnosed with this disease. But I did know that I was the only Carli, and I was going to show this disease who's boss.

Being the fearless and sassy five-year-old that I was, I wasn’t afraid to tell life to shove it. I was a born fighter, and this pesky disease was just the next battle on my list.

I knew this wasn’t going to change my attitude toward life. It wasn’t going to slow me down any, and I sure as hell wasn’t going to let it hold me back.

My attitude didn’t change, even when my insight did.

As I grew up, there were things that took me a little while longer to figure out; like how to participate in recess or gym, but my support system helped me do just that. When I couldn’t do something, I always had a buddy willing to sit out from everyone else and jump rope or swing with me. Many times I was even cooler than everyone else, because I had the power to get them out of the mile (Ha, take that life).

I had to do everything a little differently, but friends never made me feel as if I was “special”, but rather I was special to them.

My sass can be matched with the best of them, but I think after 15 or so year, this demon figured out who was boss.

Do you see what I’m getting at?

Yes, I was dealt an ugly hand in life, but with a little help, that deck turned out just fine.

This is me. This is who I’ll always be. I don’t care if you think I’m living recklessly, or I could hurt myself. This is my life and when I fall, I’ll get back up.

I’ll figure it out, one step at a time- just like you.

I’ve never been one to back down from a challenge or a battle. This disease didn’t win, I did.