I am 28 years old and I was born with heart disease.
At a day old they discovered that something was not normal about me. It took 24 hours before they even informed my parents that something wasn’t right. They decided to rush me to St. Louis Children’s Hospital by ambulance, all while my Momma had to stay and recover from a C-section.
They did a surgery to repair what they call Transposition of the Great Vessels; my vessels were reversed. They also discovered I had something they referred to as Single Ventricle because the septum dividing my ventricles was not there, so I actually only have one ventricle.
At the age of one year old, they had to fix a narrowing in one of the arteries, due to them finding that my heart rate would drop into the 40’s when I slept. In that process they came to the conclusion to implant a two-lead pacemaker to keep my heart strong at all times. I was so little they had to place the pacer in my left abdomen.
So you could say I had a pretty rough first year.
I did great while being able to go to school and playing with all my siblings. I did normal things kids did. I was big into horseback riding, sledding, and building forts. I had two more pacemakers while in school. My second pacemaker while in second grade, and my third pacemaker was inserted in seventh grade.
I may not have been able to play in gym class or do any of that but I lived a really normal life. I only had to deal with one bully the whole time I was in school. It was my fifth grade year and it was when the year 2000 was coming and people thought computers were shutting down. Well some boy had me convinced that my pacemaker would shut down along with everything else!
As I got older I started losing my self-esteem because I was the only person with scars like mine. I had a large 5-6” scar running down the middle of my chest, where even a t-shirt won't cover it. I have the two on my back that are noticeable in a tank top or a spaghetti strap top. I have a scar across my belly for my pacemaker and a bunch of little circle scars from where I have had drain tubes. But to my friends I was completely normal. I was the kid that was friends with everyone. Maybe because I liked to talk to everyone. But they treated me like everyone else. I covered my scars up for the most part, even wearing a prom dress sophomore and junior year. I didn’t want people to look at me different. My junior year I wore a camo prom dress that my stepmother and I made. It showed the scars on my back but everyone just paid attention to the dress.
Now my senior year I just kind of quit worrying what others would think about me. I started to show my scars more and more. Those scars are who I am, these scars are what saved my life and made me the person I am today. I built self-esteem and I had friends who encouraged me that what others think does not matter. I am me because of these scars.
In 2008 I had another pacemaker surgery, but this time that surgery meant another scar. They tried to go through my ribs and it didn’t work. But now I have a scar right under my right breast. Nobody can see this scar but part me was upset because, to me, I had enough scars - I didn’t need anymore. Who would want to look at a gal with all these scars. I learned to get over it - there was nothing I could do about it; the scar is there and it’s there to stay.
Then in 2011, I was faced with a difficult decision. At age 23, I had to decide to do a surgery to revise a Fontan procedure I had when I was a baby. If I chose not to do the surgery I wouldn’t live very much longer. If I chose the surgery there was a 50/50 chance I would make it through surgery. It did not take me long to make my decision at all. I had so much support from my family, friends and the great town of Seymour who all had my back. I can recall my Facebook status the day I made my decision. I posted “I would rather die trying, than to give up”. People were commenting that they were praying for me and they knew this was the choice I would make because I was strong and I don’t know how to give up. People were telling me I was an inspiration to them and that they look up to me. That was plenty enough to get me through it.
So off to St. Louis we went, and the surgery took all day to finish. I did great through the surgery until a couple days later my organs wanted to stop. My lungs filled with fluid, my kidneys were shutting down. I was just a body lying in a bed helpless. Unfortunately, I don’t remember much of those few days or the people that drove the three hours to see me. I had an amazing support group with me in the beginning of the surgery and I came out of everything with even more support. Our preacher drove up from Seymour and prayed over me with the several hundreds of people in town. At that point, I was telling my parents I was done, just let me pass away. I was ready to give up, I was done.
If you knew my family then you would know giving up is not an option. God was not ready for me to end my journey either. I was up talking and laughing with my family before we knew it! I was walking the halls and ready to head home. Seeing my family happy that I didn’t give up in the end was one of the best feelings. I’m upset with myself that I wanted to give up, but I am proud of myself and God for not letting me.
Now I am 28-years-old and still kicking the dirt under my boots. I spend my days making people laugh and smile. Now that I look back I see how many people would be hurt if I would have given up. All my parents wouldn’t have someone to pick on them and cause them stress. My brothers and sisters wouldn’t have anyone to argue with all day. My nieces and nephews wouldn’t have an aunt that would give up anything to make sure they were the happiest kids in the world. I wouldn’t have my boyfriend and his family here with me to start a new journey.
So why am I sharing my story? Because I want people to know they are not the only one's going through something hard like this. We each have difficulties in life, but you just have to keep your head up and keep going. Just remember...giving up should not be an option. God's not done - He's still working on you. I was supposed to die seven times, but I didn't. If you give up, you could miss out on something amazing. I usually say this at the end of everything. Just don’t forget to smile!