Another goal of Super N is that it’ll help N understand that his heart was a gift. If we maintain this idea that his transplant was given and donated out of love and kindness, it may help to suppress any latent feelings of survivor’s guilt once he fully comprehends the gravity of that situation. In Super N, we read that the other baby “didn’t need their heart anymore, so they gave it to Super N as a present.”
I also wrote N a book called “My Miracle Gift.” It’s a sing-song rhyming picture book about what a transplant is and where it comes from. It teaches him that there are many many kinds of transplants, and there are cartoons with age-appropriate depictions of where those organs are in the body. It teaches him that lots of boys and girls get all kinds of different transplants; it teaches him that he’s not alone.
Most importantly, though, it teaches him that the donor saved that piece of themselves just for him. It’s a very special gift, and it has to be taken care of. I used that verbiage specifically because I don’t want him to ever think he deprived someone of something, especially something that gives life. And when he asks about it, we plan to tell him about how generous his donor was to give our family such a blessing when they couldn’t use that blessing anymore for themselves. We won’t hide from those questions, but be open and honest with him, though we’ll try to be age-appropriate and tailor our responses to his level of understanding.
I don’t remember a specific time when I started asking about it. I think maybe my parents just always talked about it, so it was just my life. They just told me what they knew about him and his family. They just said that another child passed away and his parents donated his organs.
– Laura Hofheins, 27 years post heart transplant
But there’s another side to the survivor’s guilt, and that is your own guilt. I have wrestled this demon since we found out N needed a transplant. How do you begin to hope for someone else to suffer so that you can have joy? How do you reconcile happiness over the loss of another? You can’t. You just have to come to terms with the fact that there is nothing you could have done to save that other child. But you can do now is make the most of every second you are blessed with because of their gift. Do not let the memory of that angel fade. Carpe Diem, and help your precious child live to their fullest extent, because nothing is ever guaranteed.
I was truly dreading the holiday season last year. Thinking of Christmas made me burst into tears. I was so afraid of being happy and celebrating N’s first holidays because his donor family wasn’t able to celebrate theirs. All of our firsts were firsts that had been stolen from another family. I wrote an open letter to our donor as a means of dealing with the guilt.
Putting those feelings down in writing helped me define them, which then helped me cope with them. They say the only way to eat an elephant is one bite at a time. If you try to eat it all at once, you’ll choke. So I had to tackle my emotional elephant one bite at a time. The first bite was writing that letter. The second bite was publishing it, and hoping that our donor mom read it and found peace through it. I so badly wanted her to know that I always think of her and hurt for her. I wanted her to know that she was not alone. That I love her for what she has done for me. Here is the letter I published for her.
A letter to the mother of my son’s organ donor,
When my son, let’s call him Mr. Snuggles (he’s the snuggliest little love bug you’ll ever know), was seven weeks old, he suffered several episodes of acute cardiac arrest before ending up on life support, and, eventually, a Berlin Heart pump.
We were told his heart would never function properly on its own again; he needed a transplant. He is our first child, so while navigating the maze of hormones and sleeplessness that is new motherhood, I was then faced with the fact that I might lose this brand new infant into which I had poured my very being. And no one knew why.
I spent the next few months drowning in a sea of sorrow. Waves of grief crashed over me, leaving me sputtering, desperately trying to catch my breath before the next one came roaring down. They were relentless. Incessant. Merciless.
Yet through it all, Mr. Snuggles was a complete champion. They said his kidneys wouldn’t function properly for months – he promptly peed on several nurses. They said his lungs were full of fluid, but within days he was breathing over his ventilator and breathing tube. Nothing slowed him down, not even adult doses of sedatives.
According to science and statistics, he should not have made it. But instead, he made small victories every day. I think that’s what made his set-backs so difficult to endure. As soon as we allowed ourselves to hope again, an infection would crop up, or he would become fluid overloaded and need yet another procedure. Our moment of sun, our hour of calm, would abruptly end, and we would be left gasping for air again.
Mr. Snuggles never gave up, and I can’t say that I did either. But I will say that it’s exceptionally difficult to focus on the light when the darkness is omnipresent and ever-permeating. I could feel myself drifting away from reality. Mr. Snuggles was holding steady on his front line, but I was retreating.
Just when I was about to lose myself, a life ring appeared. I got the phone call that they had found a donor for my Mr. Snuggles. That life ring was attached to a rope, and at the end of that rope was a nameless, faceless hand, pulling me out of the deepest crevice of the darkest caverns of the ninth circle of Hell.
That hand was yours. While drowning in your own grief, you reached out and saved me from mine.
When I got that call, I wept inconsolably. I knew the price with which my happiness must come. While the relief that Mr. Snuggles would be saved washed over me, it was overshadowed by the gut-wrenching knowledge that a perfectly sweet, innocent baby – just like my own – had been taken too soon.
You saved me from a soul-crushing sorrow no one should ever have to endure. And yet you were, and are still, suffering that sorrow. You are bearing that burden for me. You will never hear your baby’s laughter. You will never again feel their warmth. I cannot begin to express to you what pain I feel for you. I wish I could grieve with you. I wish I could hug you and tell you the pain will lessen. But I know that it won’t. Mine hasn’t, and I still have my baby.
I wish there was something, anything, I could do to help. I think of you a thousand times a day. With every smile, every “first,” every beat of his perfect new heart, I think of you. And every time I think of you, I am overcome with guilt. My happiness is your agony. My joy is your heartbreak. I cry for you, I pray for you, and I love for you.
But the truth is that I may never know you. For all I know, you were taken with your infant. My only hope is that if by some miracle this letter does find you, it brings you peace and comfort in knowing that your angel is cherished beyond measure. All of Mr. Snuggles’ firsts, our firsts, are your firsts. Please know that whatever we do for and with him, we do in honor of your sweet angel.
I know that to say “thank you” is far from enough, but it is all I can do. From the depths of my soul, and with all that I am, I thank you. You saved us both.
When I first published it, I panicked. Had I made a mistake in sharing this? What if she actually read it and found me? How would I handle meeting her? Would she be mad that I had published this in a public forum? A thousand questions and doubts circled around in my head. Not to mention I also felt very vulnerable and exposed. My friends and acquaintances and thousands of strangers were reading my innermost personal emotions. Everything was laid out for the entire world to see.
Once I got over the initial shock of it actually being accepted for publication and the encouraging responses came pouring in, I realized that I’m not the only one that felt this way. I’m not the only one drowning in grief or feeling utterly consumed by guilt. Putting those feelings into words and sending them out into the universe helped me muddle through and navigate the murky waters of my emotions. I truly encourage you, if you’re struggling with any lingering inner turmoil, to try to get those thoughts out onto a tangible medium. It doesn’t have to be writing. It can be quilting, drawing, painting, baking, knitting, physical exercise, or whatever it needs to be. But holding in those feelings is like trying to swallow the whole elephant in one gulp. Having a physical outlet will allow you to take on that elephant one bite at a time. This blog is just another big bite out of my elephant. Find a way to translate those emotions into something productive and good so they don’t devour you.
While Davis isn’t yet old enough to experience survivor’s guilt, it is definitely something that Tucker and I have experienced. Having a relationship with the donor family has helped tremendously with this. We were open and honest with them about our feelings, and they reassured us that John Clarke wouldn’t have survived and that by having his organs donated, it has helped them in their grieving process.
-Amanda and Tucker Boswell, son Davis 15 months post heart transplant