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What It's Like to Wonder Why You've Been Given a Chance to Live

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The reality of congenital heart defects can be cruel. My heart breaks for every child who passes from this birth defect.

I was born with several heart defects. I have congenitally corrected transposition of the great arteries, persistent left-sided superior and inferior vena cavas, unbalanced atrioventricular canal, dextrocardia, mild and moderate valve regurgitation, total anomalous pulmonary venous return, and hypoplastic left ventricle. I also have right atrial isomerism heterotaxy syndrome. I’ve had three open heart surgeries, two catherizations, and countless other tests, appointments and times being sick. That being said, I am very blessed to say that overall, my quality of life is amazing (contrary to what doctors originally thought). By the grace of God, I have thrived. Sadly, not all heart patients can say that, and my heart is so heavy for them.

Sometimes, I wonder why I get to be the one to live.

I have stared at my schoolwork and wondered what the point even is. I have cried for young children who have passed away from this disease. I have wondered why things turned out differently for them than for me. Even though tomorrow is never promised, I have never wondered if tomorrow will come or not. I can confidently speak of my plans for the years to come without fearing that my heart defects will get in the way.

I cannot comprehend why others have fought and passed away. I cannot comprehend why young children pass away from this terrible disease when all they want to do is live life. I cannot comprehend why I get to live, why I get to go to college, why my parents got to see me thrive in school and in life.

I really don’t understand it.

My heart breaks to see other kids who pass away from the number one birth defect. My heart breaks for the children who long to live their life, but lay in a hospital bed instead. My heart breaks for the parents who hope their child will get the chance to grow up, and my heart breaks when that hope is shattered.

I worry when I post about the good things in my life because I know there are parents who wish for their child to thrive as I have. I never want to appear as though I am bragging for living my life. And I never want to remind families of what could’ve been for their loved one. I have wondered why I got to graduate high school, why I get to go to college and work towards my dream career, why my family gets to see me do well in life. I have wondered why I get to live while others don’t. Why other families have to mourn, and mine doesn’t.

And don’t get me wrong. I know I am blessed. I love my life. I love that I get to be healthy. I love that I get to go to school and make friends. I am blessed that I’ve never had an unplanned hospitalization. I love that I just got through my first school year ever without taking a single sick day. I love that I have thrived. But I do not forget those who aren’t so fortunate, and my heart hurts for them. And I wonder why I’ve gotten to live while other heart patients have lost their lives.

But I’m learning to look at it differently. I know it isn’t my fault. I know it isn’t anything I did.

While my heart breaks for those whose time ran out, I am deeply aware my clock is still ticking.

Instead, I accept that I still have time. And I want to take advantage for every second.

I want to show love to every single person I meet, from the homeless person outside of my favorite bakery to my closest family members. I want to befriend the people I encounter at school. I want all of my professors to know my name. I want to form some sort of relationship with every person I encounter. With the time I’ve been given, I want to love everyone.

I want to study hard and make straight A’s in school. I want to make the dean’s list as many times as I can. I want to get into graduate school when the time comes and pursue a career as a child life specialist to help other children fighting health issues. I want other kids to be able to cope with their health issues and even learn to love their scars. I want other kids to know that their health issues do not have to hold them back. With the time I’ve been given, I want to help others.

I want to tell my story. I want for people to read what I write and truly take it in. I want for people to hear the meaning behind the words in my speeches. I want for them to know the meaning behind what I have to say, not just enjoy the rhymes and phrasing. I want people to know there is so much more to life. With the time I’ve been given, I want to inspire others.

With the time I’ve been given, I want to have fun.

With the time I’ve been given, I want to be kind.

With the time I’ve been given, I want to laugh.

With the time I’ve been given, I want to try new things.

With the time I’ve been given, I want to inspire others.

With the time I’ve been given, I want to help others.

With the time I’ve been given, I want to love others.

With the time I’ve been given, I want to do it right.

the author, faith, smiling

Originally published: June 11, 2019
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