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“Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.”

— Christopher M. Jones | Mitchell's Journey

Mitch was wearing one of his favorite new t-shirts a loving neighbor gave him when they learned he was dying. The shirt bore the words, “Watch me win.” Brave words we often say when we shake our fists at an implacable disease – as if our will alone could stave off our frail mortality. Though human will is powerful, it is no match to God's will. Though he didn’t win the battle with DMD (not a soul does), he did win the bigger, more important fight. Mitch was a good human – and at the end of the day, that’s the only fight that matters. His philosophy was to be nice to others and have gratitude for life – for in the end nothing else mattered. 

I remember asking Mitch what he was thinking just after I took this photo. He said, “I’ll tell you later, Dad.” He would have this same look of knowing a few more times – and each time I asked he would respond, “Later.” Mitch never got around to telling me. Yet, I think I know.

As my son played with his toys, I couldn't help but notice the vein just above the bend of his elbow punctured by a tube that ran up his arm and pumped medicine directly into his heart. At first Mitch thought the medicine was making him better, but as death inched closer, he came to understand it was barely keeping him alive and that it wouldn’t last.

Slowly, almost invisibly, an old soul began to reveal itself. Not only was my son changing … my eyes were, too. I began to discern things that were kept from my mortal sight until then. There were times I thought to myself, “Mitch who are you, really? What is your real age and what are you sent here to do?” Though he was my child and I was asked by a loving Father to raise him, I felt like his soul was much older than mine and that, in a very real way, he was raising me. Heaven, it seems, is filled with curious mysteries.

Yet despite my growing sense he had an almost ancient soul … there he was, still very much a young child in need of love and comfort. I was beginning to see two things at once. I think Mitch was, too. I think he didn’t share with me what he was sensing because he didn’t want to frighten or disappoint me. I think he tried to protect Natalie and me in the same way we tried to protect him.

Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.

I would soon learn to look upon grief in the same way I saw my son; two things at once. Although the surface of grief is plain to see, seemingly clothed in pain and agony; there is so much more beneath – a certain beauty the human eye alone can’t see. It isn't easy or pain free - but somewhere in the midst of suffering there is purpose and a greater meaning. There are always two things at once: the thing that happens to us and then its purpose and meaning. We just need eyes 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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I’ll never forget the look on her face and the sound of her tearful whisper, lips trembling with sorrow, “Honey, how do we do this? I don’t know how to go on.” My heart, at least what was left of it, broke a little more. I whispered, “I don’t know, but we’ll do this together.” 

Our sweet little boy’s body lay silent just a few feet away from us. Almost overnight we found ourselves living a nightmare from which we could not wake … a soul-crushing pain from which we could not escape.

Next to his casket sat Mitchell’s scooter, which once carried his weakening body, now suddenly carried an emptiness that filled the room. I couldn’t imagine grief becoming any worse than it felt that day. I would soon realize that I had scarcely tasted that bitter cup – for the wages of grief were just beginning. Night had not yet fallen.

Moments later, my dear wife and I would walk into the chapel and give the most painful address of our lives. Yes, heaven felt close that day, but I was also in hell.

A few months after Mitch had passed I went to a doctor to examine my elbow, which had experienced some unusual and intense pain. After a short examination he determined I had tennis elbow. Secretly, I was devastated – for something deep inside me was hoping it was something terminal … something to end the deep pain I felt every waking minute of my life.

Although there were times I wished for death, I also knew I needed to be there for my wife and children. I loved them just as much as Mitch, yet, a part of me yearned for death so I could stop hurting. 

I was terrified of going to sleep or waking up – for that transition between wake and sleep often brought the unfiltered horror of losing my child into my mind and heart. Whatever progress I had made was lost in those moments of transition and it was as if I lost my son all over again. And again. And again. And again. Whenever that happened I would find myself in a state of panic and I would run to my son’s room and weep at the foot of his empty bed. I prayed every night that I could fall asleep and wake up quickly – so I would be spared such horrors of the mind and heart. Despite my pleas for relief, I was often not spared – and I spent many sleepless nights staring into the night sky in search of my Father.

Deep was the forest and dark was the grief; I stumbled over pebbles in search of heaven and peace. And when I was tempted to raise my hands and give up, I heard a loving whisper from my Father to instead look up. Surrounded in darkness, tears clouding the sky, I began to see with my spiritual eyes. What I saw is hard to describe … for I discerned a constellation of blessings to which I was previously blind. 

Each blessing, a dim fleck of light, came into view of my spiritual sight. It didn’t matter however great or small, when I recognized these tender mercies something inside me began to arise and stand tall. I was not abandoned in darkness and grief – instead I was tutored to see heaven’s blessings and in them find a measure of peace. 

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Mitch followed me wherever I went. He was my shadow … my dear child and sweet little friend. He seemed to always find comfort being around me and in his absence I have come to realize how much comfort I took in being around him. 

Last summer we had some family over for a BBQ . Everyone was inside or up the hill in our back yard talking. I found myself at the grill doing what dad’s do and I turned to the place Mitch usually sat while I cooked and he wasn't there. Never a chair seemed so empty. I started to cry. 

I took this photo a summer prior as Mitch sat with me while I prepared dinner at the grill one hot summer evening. It was a perfect night and I enjoyed listening to Mitch talk to me about his plans for the future. I normally never take selfies because I am far more interested in what I see in other people than I am in seeing myself. But this time I made an exception because I was with my sweet boy and I wanted a photo of the two of us. I almost didn't take this – but I am so glad I did. 

I think I am beginning to understand the deeper meaning of the scriptural passage “the valley of the shadow of death.” Over the years I have heard many recite that passage as though they were words from a hallmark card. But I have come to learn that all of ancient scripture are not only accounts of mankind’s dealings with God, but a record of real sorrows, what we’re to learn from them and why we suffer. Deep inside that poetic prose are words that carry heavy meaning. 

Death indeed has cast its shadow. Shadows, by their very definition limit ones view – we cannot see what happens over there. And in death’s towering shadow I find myself on a journey through the valley of grief … a valley that is deep in the shadows … deep in grief. It is a place where I stumble and a place where I weep as my heart and mind search for my son and that unspeakable peace. 

I miss my son, my shadow. I love him. I weep for him. And as I find my way through the valley of grief and sorrow, deep in the shadow of death, I am not afraid … for I know God lives. I know He loves us. And while being mortal we may be required to suffer – there is a divine reason for all that we experience. If we look inward and upward we can learn and grow … even through the dark shadows and deep valleys that only God knows.