I've been disabled all my life, and it hasn't been an easy ride (ha, no pun intended). Here's a little background story to help paint the picture:

Around the time I was 18 months old, my parents realized something wasn't quite right; my cute little baby shoes weren't easy to get on my feet. After talking with a pediatrician, it was recommended that my parents take me to a specialized children's hospital. My parents took me to a bunch of different doctors up and down the east coast, had genetic testing done, muscle biopsies, and a bunch of other stuff, but there were no answers.

At the age of three, my face changed almost overnight as I lost muscle strength on the right side of my face. It was thought that I had a stroke, but doctors quickly confirmed that wasn't the case. Shortly after, my parents noticed my hands were contracting. We still went to doctors and there still weren't any answers.

Growing up disabled came with a variety of emotions. I remember in fourth grade being so confused about why I was made this way, literally thinking I was an alien (spoiler alert- I have since confirmed I'm an actual unicorn). My parents always knew what to say to make me feel better, but I couldn't help but wonder why.

After going to so many different, well known specialists, at 17, I decided I was done with doctors, and basically dropped out of care. I just wanted to keep living my life, and not hear how interesting or unique I was. It got exhausting hearing that appointment after appointment.

Into adulthood- Around age 23, I realized, but didn't fully admit that my abilities were changing. I couldn't do the things I used to like walking, dancing, and even moving without a great deal of effort.

Fast forward to age 27 when I had the opportunity (and was willing to get into all this again) to do some genetic testing through The Speak Foundation. When the results came back, they were basically inconclusive (some unknown female variant of Duchenne muscular dystrophy). Even a few months later, I had a whole genome sequence done; they tested 22,000 genomes. I figured with about only 25,000 genomes in the human body, they'll have to find something!

When I got the results back, they didn't find anything. I was beyond upset as I was really hoping to get an answer. I cried, I was mad, and wished I could run.

Thankfully one day when the snow was quickly coming down, I was talking with one of my beautiful friends who reminded me that God has this (my disability) under control. He made me, just like He made each of the snowflakes falling from the sky. Support from amazing friends like this helps me through life and for that I am grateful. However there are times I wish I could just run, do something on my own to feel better.

As I continue sharing my life story with you, I want to preface my story by truly acknowledging and understanding that we all experience stress and I'm no different in that aspect. The difference is that I am often unable to release my stress and emotions through vigorous physical activity when many times I wish I could just go for a run.

The cycle you see in the pictures is one that I am loaning and can only be used when the adaptive cycling program is running (Sundays in May through October).

I am hoping with your support that I will be able to purchase one of my own that I can use at any time. I want to be the best version of me so I can continue showing up for my students and disability community. I know how I've felt, gosh I cant even put it into words, when I've gone for a 15.8 (yes, I'm counting the 1/8th of the mile because darn, I worked hard for it!), and I hope to feel that great more often!