Laura-Ashley had taken Mitch on a stroll down the hall while we spoke with the transplant team. By the time this photo was taken, we had already been told the devastating news – Mitch would be denied a heart. I remember this moment well. I sat across from Mitch and listened to his sweet voice talk about a video game he wanted to play. I struggled concentrating on his words; for while my son was focused on youthful things, I was weighed down by mortal things. The prospect of certain death weighed heavy on my shoulders.
Later that night I posted this video about our experience: vimeo.com/54167124
I entitled that video “No Exit” because for my son, there appeared no exit … no way to escape the catastrophic muscle wasting of Duchenne Muscular Dystrophy. No way to escape death. While our son’s cardiologist presented transplant as an explorable option, I realized quickly the decision had been made long before we arrived. So, I was confused why we were there in the first place.
I tried to hide my anguish from my son and hid my sorrows behind a fading smile. I kept it together – but Mitch knew me and sensed something was wrong. Later that day, Mitch asked me, “Dad, what are you thinking?” I said, “Son, I’m just thinking about the value of time and how much I treasure every minute I spend with you.” Mitch smiled and said, “I like spending time with you, too, Dad.” With that, he turned and skipped down the hall in his funny way. I turned my head and wept.
A few months later, I would see this same transplant team walking about the cardiac intensive care unit rushing to the aid of other children who qualified for a transplant, while my little son lay in the same unit sentenced to death. Imagine the heartache, confusion and desperation we felt – then magnify those feelings a million-fold. That, then, will represent only a grain of our sorrow.
I asked attending doctors about an LVAD and they uniformly told me that wasn’t an option. It wasn’t until Mitch was home on hospice we heard from Pat Furlong at Parent Project Muscular Dystrophy who offered to help get Mitch an LVAD. For reasons I will detail in future posts, and in greater detail in a book, the promise of hope was dashed by a series of heartbreaking realities. The hardest reality of all, there was no exit.
It was only a few months after Mitch passed that I was asked to speak at PPMD’s international conference about our experience. A few doctors in the medical community told me how angry they were that Mitch passed away – but after hearing my address about my son, they realized Mitchell’s purpose (at least one of them) was about something much more – and their hearts were softened.
Anymore, I’m not afraid of death. In fact, in times of deep grief I have wished for it. But I also value life and the hope it offers. Though I have traveled broken roads of grief and sorrow, I have also discovered wells of peace and healing. It is not all terrible. I worry less about my earthly exit and more about how I exit.
The hard reality is none of us exit this life alive - and that is what mortals misunderstand. We confuse death as the end - but it is not. It is a return to our previous state. Death will come to each of us … and for most of us, we will see our loved ones go before us, some will even suffer greatly before they go. But everyone goes. Our hearts will be broken - sometimes more often than we think our hearts can handle. In our loss, we will long for the companionships we once enjoyed; Heaven knows how I ache for my son's hand.
The point is, sorrow will become familiar to each of us - and it will become our teacher or tormentor. In the end, we decide what meaning suffering has for us and whether it breaks or builds us.
This photo was taken almost exactly 3 years ago. It feels like yesterday, yet at the same time a world away. I have experienced so much sorrow and self-doubt between this moment and today. But I have learned a great deal and I'm not about to throw that away. That is what my son taught me ... I have today.