“I remember every single detail about this day.
I knew what I was coming into, but in no way was I prepared for it. Your nurses before me had gotten you so handsome and dressed for your family. You looked so small in that big bed.
I remember getting pictures taken, making sure you looked your absolute best with each click of the camera.
I turned the monitor away when we pulled your breathing tube out. I remember putting you in your mom’s arms so you could be snuggled while you drifted off to sleep. Time seemed to pass so slowly.
I hid behind the curtain that was pulled and shed silent tears while still being able to see you through the crack. I still hear the echo of ‘I’m so sorry, but he is gone,’ the doctor spoke to your parents.
Those words will forever stay with me.
How can anyone fully prepare to say goodbye to a patient? To transition to that point where the best thing to do for them is to let them go? The truth is, we can’t.
We fight for these kids so hard, giving them every chance we possibly could. When we reach the end of life with these heroes, it’s always after a tremendous battle they have fought. Their bodies are tired.
We do our best to transition it to something beautiful. Peaceful. To honor them and the tremendous fight they fought. We do things that will help keep their memory alive.
I want families to know that we don’t forget your kiddos when you leave the ICU. They make an impact on us. We mourn with you, we remember them, we remember you.
These heart heroes fight long, and they fight hard. They have taught me more about myself as a nurse and even as a person than I thought possible. They teach me what it means to fight a good fight, to find a way to smile through the pain, to never give up even when the odds are against you.
It is an absolute honor and privilege to be able to take care of them. And because I have the honor to know and care for them, I have been changed for the better.
This story was submitted to Love What Matters by photographer Suha Dabit, founder of “World of Broken Hearts.” She photographs families during the most vulnerable times in their lives to help spread awareness for congenital heart disease (CHD) and organ donation. The mission is painfully personal for her. She, too, has a daughter who would not have survived without a heart donation.
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