By all medical standards, I should not be sitting here writing this piece. My life was critical and fragile from the moment I exited the womb. Thanks to wonderful doctors and medical advances, I am here today to share with you a little about what I like to call my humble beginnings.
As the sun pushed over the horizon on March 14, 1992, my twin and I pushed fighting breaths out of our lungs for the first time. We were born at 25 weeks gestation and there was no rhyme or reason why we were born so premature. Amanda was 1 lbs 9 oz and I was 1 lbs. 7 oz. I spent the first five and half months of my life in an isolette, a special bed for premature babies, and underwent many medical procedures to keep me alive. There was a specific medicine that was new on the market at that time called surfactant that was used to develop premature lungs. This medicine really helped mature our lungs and have a better quality of life.
After we left the hospital, we continued to go to doctor appointments and we were on oxygen for the first year of our lives. At one year old, my mom took us to the doctor because we were not meeting our milestones. We were diagnosed a short time later with cerebral palsy. My cerebral palsy affects my legs more than anything else and I get tired when I walk long distances. Most people tell me that they cannot tell I have cerebral palsy which I am not sure if I should take that as a compliment or not. My twin, Amanda has more severe cerebral palsy and is in a wheelchair. She receives weekly therapy sessions to help her muscles and joints.
Over the years, our cerebral palsy continues to affect our daily lives and has resulted in a few surgeries for each of us. At thirteen years old, I had a surgery to release the tendons in my calf and hamstring muscles so that I could walk like a normal person. But then again I always say that normal is just a setting on a dryer and therefore, no one is normal. I guess I should use the term typical instead 🙂 Amanda had a back surgery seven years ago to straighten her back from the effects of scoliosis and can now sit up straight without pain.
We just turned 25 last week and have come a long way since the first fragile days in the hospital. These days, I am active in the community and work part time at a local children’s museum, which I love. My sister spends her days volunteering with a few different organizations and connecting with friends. We are both fighters and don’t let our disability stop us from living life to the fullest.
Jessica Ebersole is a twenty-something who lives in Chicago and explores life through the eyes of someone with a disability. Jessica has cerebral palsy but she does not let that stop her. She spends her days at a children’s museum and enjoys serving the community in various ways. She loves spending time with family, connecting with friends and photography.