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.
It had only been a few short hours from the time little Mitch passed away. I felt like I had been thrown overboard into a vast sea of grief – how deep and violent that sea would become I never imagined. I had clung to a little raft of hope for so long – and in a moment, that hope for one more day … one more moment with my son was suddenly submerged in terrible waves of sorrow.
It was that realization he was gone (I mean really, really gone) that was terrifying. My soul experienced a new, darker form of grief as what little hope I had was dashed and absolute. Like wading in the ocean; one moment surrounded in warm water then suddenly the water went cold, then warm again … our emotions were no different. One moment we felt peace, the next moment unimaginable horror. The nightmare I was terrified to imagine became a suffocating reality.
My dear wife sat on the edge of our bed quietly weeping when my oldest sister came into our room and began to console her, mother-to-mother. This is the same sister who knew Natalie and I sat in the hall outside Mitchell’s bedroom and wept while he slept and brought us cushions to sit on just days earlier. I made mention in a post how hard the ground felt and this good woman offered the only relief she could.
As a father, the death of my son stripped me of everything. I was no longer the protector of my children but instead a helpless, terrified bystander to the implacable force of death. I loved my son and wanted to save him – but I failed. My wife and I were terrorized by feelings of doubt, frustrated that medical interventions presented themselves too late, and panicked by an endless list of “what if’s.” Although the morning sun had risen, night had scarcely begun.
Then entered my sister, an angel made mortal. Like heavenly wings of comfort, she wrapped her arms around my broken wife and wept with her. I wept at this very sight – grateful for compassionate souls. Today, when I look at this image of my sister mourning with my wife, my heart is softened and my soul soothed. I don’t know much, but I have come to know we are comforted, as if by a whisper, by those who have gone before us. Though they want for our happiness, they mourn with us … not out of pity or disappointment that we are sad, but empathy. They understand that we hurt and they hurt with us. Sorrow over loss is nothing to be ashamed of. It is an evidence of love. I can see Mitch holding my wife, sight unseen, whispering to her soul, “I know mommy, I miss you too. I am sorry that you hurt so much. I understand.”
I recently had lunch with a good man and colleague. He is an ecclesiastical leader and a man of great faith. He asked the question, “Why do some people really suffer by the loss of a loved one while others seem to accept it as a fact of life and mortality and move on?” I was a little surprised by his question and didn’t quite know how to answer it at the moment – I only said when my father passed away, that was hard. But when my young son died, it was life altering and soul shattering.
Grief is hard. It is the hardest thing I’ve ever experienced. Ever.
Sometimes grief comes barging into my heart at the most unexpected moments. I was on a business trip last Friday and everything went better than expected. I was excited about the future and my heart was filled with hope and anticipation. Then at about 10:30 PM, on the flight home, I dozed off. I began to dream of my dear son and somewhere between sleep and consciousness I realized Mitch was gone and my soul panicked. I awoke in a terror and my heart was pounding. I felt the pains of loss anew – with the same intensity as this very morning when I lost my son.
So, what is the point to all this suffering? The answer lives deep within - where secrets of the soul are ours to win. They do not come easy - in fact they often come at a cost ... sometimes at the hand of a terrible loss. But when we learn to look and see, our hearts will be healed by a most heavenly scene. Perhaps, after all, when we felt most alone, we were comforted by arms unseen and wings unknown.
I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”
I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries.
When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.
Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.
There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013)
In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot.
This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me.
In time, I will see.
We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs.
Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.
He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life."
I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.
I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong.
Whatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.
He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see will come from the light within.
Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.