Beginning of my journey with Muscular Dystrophy
I (@kloyouknow) was born with a rare form of Muscular Dystrophy. I grew up using a manual wheelchair, able to push myself wherever I wanted to go. I was able to keep up with my friends and brother, take tap and jazz classes, dance at family weddings with my cousins; basically, live a normal life. As I got older and it became necessary to use a power wheelchair, I gained an even bigger amount of independence. I could help out with chores, go places that weren't as easy to maneuver in a manual chair, "run" the mile with my friends in gym class. That was all great. I loved feeling like a "Normal" kid. But questions still circled with what my future would hold. Would I continue to lose muscle strength? Would I be more dependent on others? Would my life remain as good as it was? As my strength declined, I started developing Scoliosis. I endured a 10-hour surgery to correct my curve and spent 9 days in the hospital plus the rest of the summer recovering at home.
Life went on with Muscular Dystrophy
Fast forward to when I was 14 years old. I was steadily losing weight and not sleeping or eating enough for my age. I'm a shallow breather and I was using all of my calories to breathe. After a few weeks, my parents took me to the ER where it was ultimately decided I needed a feeding tube placed in my stomach. The next day, the staff inserted a temporary feeding tube through my nose. They did not check the placement of the tube, as they should have done. They started to feed me the liquid nutrition but within the hour, I coded and stopped breathing. Due to my small jaw opening, they could not intubate me. They tried but ended up knocking my two front teeth out in the process. After all of this, they rushed me in to surgery for an emergency tracheostomy. During this surgery, they collapsed my lung but that's the least of my worries since they saved my life. I was put on a ventilator to help my lung heal and my body rest. A few weeks later, I went in for the surgery for the feeding tube in my stomach. The doctor did not read my chart and knocked my teeth out again as she was trying to insert the x-ray scope. After having my teeth knocked out twice in such a short amount of time, I needed a double root-canal to save my teeth. I was in the hospital for 5 weeks. 1 planned and 2 unplanned surgeries later, I was able to come home and recover on my own. All of these changes really put my mental health in question. I had a hard time coping and adjusting to this new way of life. I had bad anxiety attacks just thinking about all the changes. I questioned why all this happened to me. I questioned if I'd be accepted like I was before. I worried and cried a lot over the "What if's?". After talking with a therapist weekly and discovering my love of music, I really started realizing that while things were different, life would go on, and I could move on and start the rest of my life.
the good returned to my life
After everything that had happened, finally the good returned to my life. Normalcy and new routines were established. I graduated high school with honors and scholarship offers! Yay! I went to college and studied Social Work. While it wasn't a typical college experience, it was the perfect fit for me and I couldn't ask for a better education. I'm now applying to get my masters to become a licensed therapist that can help children and families go through hard times. I want to be the person I needed and had in my teen years.
My Normal
All of this to say, I doubted and worried myself to tears for no reason. My life in a wheelchair, with a trach and ventilator are my normal. It limits me but I do not let it stop me from achieving my goals and reaching my dreams. I can do this!
