Survival
In the dimly lit ICU room where the lullaby of beeping monitors slowly lulls my son off to sleep I struggle to put together all we've experienced in the last month. On the eve of Finnegan's one month heart anniversary I want to vomit my feelings onto the page in hopes to make sense of them all but I don't know that it will help. One month ago the heart that I gave my son, the one we grew together for more than nine months, was delicately and purposely plucked from his chest and replaced with another child's. How do you ever come to terms with that?
We knew from the beginning that a heart transplant was not a cure, rather trading one disease for another. Finn no longer suffers from heart disease, but now immuno-suppression, increased risk of cancer, diabetes, kidney issues and of course potential additional heart transplants. That, the daily anti-rejection medications and increase doctor appointments, lab draws and more were all part of the deal. We signed up for this. What I didn't realize would be so tough was the recovery from the transplant itself. Finnegan has tried on everything in the past month; cardiac arrest, infection, rejection, clotting, extubation and reintubation, kidney failure, pneumothorax, withdrawals to name a few. There were times when I thought it was over. I thought he had given up or that we had pushed him too far but he just kept coming back. He wants to be here as much as I need him here.
Reflecting on what brought us to this point I'm touched by the strength that families have found in tragedy. The gravity of this situation is not lost on me. To know that a baby had to die for mine to live is not easy to come to terms with. There were days, still are, where I had what I can only assume is some sort of survivors guilt. I choke back tears thinking of how the mother of Finn's donor is feeling tonight. A month ago this evening she tucked her child in and said goodnight for the last time. How cruel time must be. I cannot fully understand the pain she feels but I came close, more than once. I wish I could wrap her in the love I have for the precious gift she offered my child. Maybe someday the sound of her child's heart beating within the wall of Finn's chest will bring her some comfort.
Tonight I am grateful but I am also sad. I feel guilt for the anger I have with our recovery. I knew the heart wasn't supposed to fix him, but it was. At the very least it is supposed to be so much better than this. Since receiving his heart Finn has had so many struggles and been in so much pain. We were told early on that waiting would be the hardest part however in a cruel twist the hardest part is post transplant. The last month has been excruciating as the darkness has become blinding while the light has rarely peeked through. Every time I think he is getting a break or turning a corner we are hurled back down into that twisted place of pain and fear. I know we will find a way to crawl out of this hole soon. We will be covered in dirt and the sun will surely hurt our eyes when we do, but we will trudge through the darkness until we see that light.
The responsibility I now feel is tremendous. There are two children that lay in the bed before me. My sweet baby and the angel that saved his life. I have to somehow find a way to make room for all the feelings that this experience has introduced me to. Before I thought I knew love, sadness, fear, excitement and anxiety but I didn't. Not like this. To say I was blissfully ignorant is a gross understatement. I will never be able to un-know or un-see what I have within the walls of St. Mary's Hospital. It has forever changed me. How can you be grateful, resentful, angry and joyful all at the same time? My life feels like such a contradiction.
Finn's journey and that of his donor heart is far from over. He has proven time and time again he's going to fight. I know he chose me to go to battle with him and I will honor him by staying strong but also allowing myself the weakness that comes along with it.
For now we are still surviving. I can't wait until we can start living.
August 12, 2017
We knew from the beginning that a heart transplant was not a cure, rather trading one disease for another. Finn no longer suffers from heart disease, but now immuno-suppression, increased risk of cancer, diabetes, kidney issues and of course potential additional heart transplants. That, the daily anti-rejection medications and increase doctor appointments, lab draws and more were all part of the deal. We signed up for this. What I didn't realize would be so tough was the recovery from the transplant itself. Finnegan has tried on everything in the past month; cardiac arrest, infection, rejection, clotting, extubation and reintubation, kidney failure, pneumothorax, withdrawals to name a few. There were times when I thought it was over. I thought he had given up or that we had pushed him too far but he just kept coming back. He wants to be here as much as I need him here.
Reflecting on what brought us to this point I'm touched by the strength that families have found in tragedy. The gravity of this situation is not lost on me. To know that a baby had to die for mine to live is not easy to come to terms with. There were days, still are, where I had what I can only assume is some sort of survivors guilt. I choke back tears thinking of how the mother of Finn's donor is feeling tonight. A month ago this evening she tucked her child in and said goodnight for the last time. How cruel time must be. I cannot fully understand the pain she feels but I came close, more than once. I wish I could wrap her in the love I have for the precious gift she offered my child. Maybe someday the sound of her child's heart beating within the wall of Finn's chest will bring her some comfort.
Tonight I am grateful but I am also sad. I feel guilt for the anger I have with our recovery. I knew the heart wasn't supposed to fix him, but it was. At the very least it is supposed to be so much better than this. Since receiving his heart Finn has had so many struggles and been in so much pain. We were told early on that waiting would be the hardest part however in a cruel twist the hardest part is post transplant. The last month has been excruciating as the darkness has become blinding while the light has rarely peeked through. Every time I think he is getting a break or turning a corner we are hurled back down into that twisted place of pain and fear. I know we will find a way to crawl out of this hole soon. We will be covered in dirt and the sun will surely hurt our eyes when we do, but we will trudge through the darkness until we see that light.
The responsibility I now feel is tremendous. There are two children that lay in the bed before me. My sweet baby and the angel that saved his life. I have to somehow find a way to make room for all the feelings that this experience has introduced me to. Before I thought I knew love, sadness, fear, excitement and anxiety but I didn't. Not like this. To say I was blissfully ignorant is a gross understatement. I will never be able to un-know or un-see what I have within the walls of St. Mary's Hospital. It has forever changed me. How can you be grateful, resentful, angry and joyful all at the same time? My life feels like such a contradiction.
Finn's journey and that of his donor heart is far from over. He has proven time and time again he's going to fight. I know he chose me to go to battle with him and I will honor him by staying strong but also allowing myself the weakness that comes along with it.
For now we are still surviving. I can't wait until we can start living.
August 12, 2017
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