My name is Jermaine Napier. I was born July 3 1986, and five months after my birth, was diagnosed with a Congenital Heart Defect (CHD). Mine is known as Shone’s Complex. Dealing with Shone’s, I endured two open heart surgeries, the first at five months and the second at three years old.
Normally when I tell someone I have Heart Disease they say something like “I am sorry to hear that”. But to be honest, I have never known life without CHD. They told my mother that my brain function may be too low to enter regular public schools, but she refused to see her child treated that way, knowing his potential. In kindergarten, I remember wearing two back packs instead of one. The first had the normal books and crayons but the other was connected to me.
When you count the hours and days my family has spent by my side, my life took so much time out of their own. Sometimes I think my family has been more impacted then me. The responsibilities of a parent are tough enough. Children are unable to recognize that despite what may be going on in their parents’ personal lives, they still have to work a nine to five, not only to take care of the regular bill but any difficult situations that may arise. They say it takes a village to raise a child. For me the village was always there by my side, a mixture of my parents’ friends, extended family, CHD family, church family, and even their co-workers. That I can be thankful for.
My father was a track runner so it was automatic that my sister and I ran track & field. But what about running with CHD? All my life I ran recreation track until the age of thirteen when I decided to live my life, my way.
Some of my lowest points came in my youth when I thought about my future and all the things I might miss out on like graduations, and birthdays. I began to research my disease and what I found was devastating. I would tell myself “Why worry about the future when they say you may not have one?” I stopped caring about life and only cared about myself. My grades in school were affected and I can recall my teachers telling me how great of a personality I had but to me that didn’t matter because I didn’t have much time. Ignorance is bliss and before I researched my disease I never thought about dying. I am thankful I still graduated.
Sometimes, life slows you down and can change your entire outlook. At the age of 18, I hit a tree going 90mph. My accident put me in a coma, gave me a broken femur, required me to have reconstructive facial surgery, dental surgery, and to have to amputate my right leg. The tables turned and who would’ve thought that the strongest muscle in my body at the time would be my heart.
Through this journey, I’ve realized that CHD has prepared my spirit to overcome anything. After stepping out of fear and recognizing that was hope in the future, I dedicated myself to learning how to eat, walk and live all over again. Fast forward to today I have reached the age of thirty, am married, with a one year old named Juliana Grace, am a chef, speaker and athlete.
A hero to me is not just one who overcomes adversity, but one who can encourage others.
The Heart Hero Cape has given me comfort. The cape has allowed me to see the future and given me the opportunity to be a hero and encourage others. The Heart Hero Cape is a representation of a community full of Hope.
My life has taught me that everyone is born with a purpose, some choose to discover it, and some do not. But everything that is created is created for a reason. I always remind myself that normal is whatever you want it to be in your reality. In my reality CHD does not define me, I define CHD.