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“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. ”

— Christopher M. Jones | Mitchell's Journey

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.

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“The trouble with time is we always seem to think we’ll have enough of it.”

— Christopher M. Jones | Mitchell's Journey

The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son. 

The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.

Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band aids, scraped knees and children’s books. But that was not our lot in life.

I’ll never forget our first encounter with our hospice nurse. She was so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition to death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare my son.”

After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to truly grow.

Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow. 

So there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears wondering how I could have been a better husband and father. I made plenty of mistakes and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes and I always made things right with my kids. Instead I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.

The trouble with time is we always seem to think we’ll have enough of it. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much. 

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“The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different. ”

— Christopher M. Jones | Mitchell's Journey

There are some moments in life that burn an image into your mind with permanent marker – and some experiences so hard to bear, they change the shape of your soul. This was one such moment that broke me and reshaped me in ways I'm still learning to understand. 

My dear wife was dressing Mitch at the funeral home. Our mothers were with us as well as our oldest sisters; each of whom played a precious and sacred role in Mitchell’s life and we wanted them to participate. Also, we were afraid of doing this alone.

Our once-little baby had grown into a beautiful, funny, thoughtful, and caring young boy; yet there he was laying quietly on a table – motionless and frighteningly cold to the touch. My sweet wife, along with these other good women, reverently dressed Mitch in preparation for his funeral - where we would honor the good little boy that he was. Natalie was doing okay until she got to the last button – then grief washed over her like tidal wave, thrashing her about on the inside. This was the last button she would ever fasten for our son – and that broke her heart. It broke mine, too.

I was a wreck that day. In fact, I was a wreck on the inside for many months afterward. Years, in fact. I think I've just begun putting my pieces back together again. Even still, I carry a father’s grief and it is a terrible burden. Yet as much as I hurt on the inside, I know my wife hurts in ways I cannot imagine - for I am a simple man. On the other hand, she carried him, gave birth to him and made sacrifices in ways only a mother can - and with that pain and sacrifice comes a love unique to that service and surrender. So, I consider her grief hallowed ground. I silence my own tears so that I might wipe hers and scoop up her shattered pieces. And when I can, I try to gather mine.

All too often I hear people suggest “there is nothing like a mother's love” – in a manner that seems to subordinate or dismiss the love of a father. In like manner, I hear less often the same of a father’s love as being more than anything else. It's almost as if they claim one love is greater than the other. Nothing could be further, yet at the same time closer, to the truth. They are correct in saying there is nothing like a mother’s love; in the same way there is nothing like a father's love. Both are different, both are beautiful and sacred in their own right. But to suggest one is greater or weightier than another ignores one immutable truth ... they are both parents and hurt deeply for the one they loved and lost. Maddeningly, some people are so focused on comparing grief they forget to simply honor it.

So when I look at this photo, I set aside my own sorrows and I reverence my wife’s. Her sorrow is as unique to her as her relationship was with Mitch. It was beautiful, vast and deep.

The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different. 

Neal A. Maxwell, a man I greatly admire, once wrote, “We should certainly count our blessings, but we should also make our blessings count.” I love that statement because it reminds me of the importance of putting our blessings to good use - otherwise we are throwing our gifts away. 

Mitch ranks among the sweetest of the many blessings I have received in this life. I vow every day, when I button my own shirt as I ready for work, to remember the blessing Mitch was in my life. And most importantly, to make that blessing count … to allow this experience to become an agent of change for the better. This image, burned in my mind and heart, reminds me to make Mitchell’s last button count – if not for anyone else, then for myself.

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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.