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Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.

“I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. ”

— Christopher M. Jones | Mitchell's Journey

For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him. 

I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.

And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.

Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.

I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.

Thirty minutes later, he was gone. I know he heard me. I know it. 

The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.

Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me. 

So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.

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Mitch was home on hospice when we heard a soft tap on our front door. It was Carter, one of Mitchell’s best friends accompanied by his loving mother, also a dear friend to our family. In his arms was a valentines box he carefully made at school filled with all manner of treats kids love to eat. The kids at school had just done their candy exchange and not even Carter knew what yummy treats were in his box. I remember how much I treasured those things as a kid – and I saw that same look of treasurement in Carter’s eyes.

We escorted this young boy downstairs where Mitch was playing a game. Carter knelt down and opened his box of sweet treasures for the first time. Before even looking at what was inside Carter said, “Mitch, take whatever you want.” 

Mitch was shy and looked through his box of candies. Carter’s quiet smile was magnanimous. My eyes filled with tears as I witnessed two giant souls clothed in the small bodies of young children. I saw my son who was fighting for life and his dear friend giving Mitchell’s life a little joy and happiness. Whatever Carter lost in sweet candies that day, he made up for in sweeter memories – which last longer and taste sweeter than anything I know.

A few years ago I wanted to travel the earth to explore the world’s wonders. I realized in this moment the world’s greatest wonders were already before me. They weren’t marked by vast canyons, lush terrains or majestic waters. Instead, the world’s greatest wonders wore small, worn-out shoes. They had grass-stained knees, played with plastic toys and built cities with their young imaginations. They laughed and played and sometimes tried their parent's patience ... but in the end, they wanted nothing more than to make their parents happy. The world’s greatest wonders were children. I always knew this – but at this moment I knew it a little more than the times before.

A few weeks later Carter would visit Mitch again … but this time at his funeral, sobbing in ways only a young child can know. His sweet smile was exchanged with deep, childhood grief. My heart went out to Carter and I was pained he had to experience such grief. I knelt down, swallowing my own sorrows, and gave Carter a father-like hug and thanked him for being such a dear friend to my son. I told him, “Because of you, his life was blessed.” 

I have had many people ask me how I’ve learned to cope with grief. My answer is that I’m really no different than anyone who grieves – and that I still have moments, sometimes agonizing hours where the gravity of grief is so great death would be a sweet release. It is a terrible burden. At the same time it is also a paradoxical blessing – for those same burdens that brought me to my knees, bruised in sorrow, have also lifted my heart and mind heavenward.

In my loss I have gained new perspective and a deeper relationship with my own Father. He is eternally kind and patient with me as I stumble in my own ways. If I could just learn to be like these young boys …

One thing I have discovered about grief and learning to live again is that if I can set aside my own sorrows to lift and love another, just like Carter did in this photo, then my broken heart heals a little. At least to me, a key to grieving well is learning to give. 
 

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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.
 

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I was recently made aware of Tonya Dreher and Chris Balch, two remarkable people who are about to leave on a journey to Everest, where he will raise a flag with 1,000 names of children who have DMD or have fallen by it. I was humbled to see my little boy's name on this flag.

Here's to people like Mr. Balch ... who build others up, offer hope and encouragement and are trying to raise awareness for this relatively invisible, fatal disease.

You can learn about their quest for hope here:
www.everesttoendduchenne.org/