Heart Day

This day rolls around every year and it seems like every year I have a harder time putting into words all that is weighing on my mind. This day comes with immense joy, heartbreak, guilt, pride, gratefulness, anger, celebration, fear, and prayer. It seems impossible to have all those emotions at the exact same time, but I can tell you that it’s not.

I woke this morning not to my sweet girl’s giggles, but to my heart beating. I could feel it in my chest beating hard and strong. I take notice of it often, but this particular morning I’m even more aware. The tears start before I have time to even consider the date and I begin to wonder how they are doing today, 17 years later. 17 years. The emotions of that day are still very raw to me. I can remember the tears I shed in relief that I was going to get a heart. I remember the tears I shed as my pastor prayed and I heard both my mom, my dad, my grandparents, and my sister sniffle away their tears of fear. I remember the smell of the pre-medication that would help me relax before the surgery. I remember sobbing as they rolled my bed into the elevator and I hugged the neck of many of my family members, scared I’d not see them again. I remember sobbing harder when they laid me down on the very cold operating table and I remember trying to count to 10 between breaths. I remember the mask as they placed it over my face. and I remember him telling me I was going to be OK but it was OK that I was scared. I remember trying really hard through my sobs not to go to sleep… and I remember praying in that last moment that God would let me wake up.

Somewhere during that very hour of all my tears, there was a family shedding just as many tears for the very reason I was. Except, unlike my tears, theirs were not for the fear of death, but their tears rolled down their cheeks because death had already taken from them someone they loved. A son or daughter. A brother, a cousin, a sister, a best friend. For a very brief moment I sobbed with them during the very hour they sobbed. Though I was selfishly crying over my own fears, I had a very real understanding during those moments what could happen next for me. As I hugged everyone that morning, I feared I would never hug them again. Somewhere a family was facing that very reality, not just the fear of it.

 

That’s not fair. It’s not fair that in order for me to have lived 17 more years, someone had to die. It wasn’t fair that a family didn’t get to spend their 17 years with the one they loved. And that hurts. Many people reconcile my emotions by telling me that my donor probably would have died anyway, that if I hadn’t of gotten my donor’s heart someone else would have. A friend told me once that it wasn’t like their was a lottery and my donor’s card was pulled so he HAD to die so that I could live. These are all true words. But it doesn’t change the fact that there is a healthy heart beating inside of me that use to beat strong in another persons chest. It doesn’t discredit the fact that the only way for me to have lived was for someone else to die. It doesn’t discredit that my donor is a hero, and his family as well.

You must understand that when you walk around with someone else’s heart, though mine now, will always still be partly his. There is a family out there that belongs to this heart too… and today, while I celebrate a wonderful 17 years of life. They are mourning the 17 that were lost.

17 years. It takes my breath away to think that it’s been that long ago. I was finishing up 4th grade when I found out my heart was failing and I had just began 5th grade when I became one of the 20+ kids at CHKD to have a heart transplant. When faced with the fact that without a new heart I didn’t have very long to live, it was devastating news. I was expected to have somewhere along the lines of 5 to 10 years before needing a transplant… not just 5 months. It was shocking, but what was more shocking to me that day that they walked in and prepared me for my hospital wait because I was just too sick… was the fact that I would wait in the hospital for as long as it took for my new heart. I remember joking one night while waiting about how it felt to wait… I remember well saying how tired I was of being in the hospital and it was time we put signs up along the interstate off ramps saying wreck here Steph needs a new heart. It was an awful thought, but a mood lightening one for me… because thats what it was like. Every day I waited, I waited for someone to die. It was more than just waiting for my heart to come in the cooler and waiting to make it to the OR… I was simply waiting for someone who had the same blood type, body size, chest cavity, and heart as I did to pass away. That’s a huge weight to bear and it’s been one I’ve struggled carrying ever since. There will always be a sense of survivors guilt – I lived and he didnt. There will always be an ache deep within that my heart belonged to someones child and family member. There will always be anger at the process. Why can’t they make artificial ones work and then no one would have to wait for someone to die. And there is a constant fear that I will have to do it all over again if I fail this heart.

On the contrary to the emotions I struggle with most, I am certainly grateful for the decision that my donor and his family made for organ donation. In a time of loss this is not an easy decision and their selfless decision makes them radiant heroes in my book. I’m proud to say I had a heart transplant, and even though I know nothing of my donor family, I’m proud to credit their decision and to carry the heart of someone so strong and so special. I’m joyful and celebrate my 17 years. My new heart gave me the opportunity to be a softball pitcher less than 6 months after my transplant. I was able to be a ballerina and dance my way through middle and highschool. I was able to become a high school graduate and continue on to graduate college. It gave me the opportunity to fall in love with Jesus and better understand grace, not just salvation. I married the man who would take care of me, stand beside me, and love me no matter what life brought. I was able to fulfill my dream of becoming a wife. It allowed me to grow as an adult and fall in love with myself. I became a mother and it has by far been the most joyful journey I have walked. My transplant prepared me for the emotions tied with adoption, because it was then that I would gain a new joy and new life at the sake of someone else’s pain and suffering. It has allowed me to be empathetic and compassionate and truly shaped me into who I am…. not just because I received a new heart, but because of the people I met along the way and the experiences I had because of my transplant.
I am grateful, I’m proud, I’m overjoyed to live. I hurt, I have guilt, I’m angered because my heart belongs to someone who didn’t.

To my donor: There is not a day that my gratitude is not infinite. I will forever be in debt to you for saving my life. You have taught me strength, passion, selflessness, and victory. I strive to live my life in a way that would make you proud that your heart dwells inside me. When you look down, I hope you smile and find yourself glad that your heart made it to me. I feel you with every beat, please know that in 17 years I have not forgotten you or family. Save a place for me sweet one. I can’t wait to meet you, hug you, and cry with you. Thank you. You have allowed me to live a life that many only dream about and I am overwhelmed with thankfulness and pride to say my heart belonged to you first. I will continue to strive to make each rainbow count in efforts to honor the you and the heart you gave me. I love you.

Until we meet again,

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