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Mitchell’s casket had been removed and all that was left was his scooter, gently adorned with his little shoes, a bottle of water he loved to drink, and a few memorial gifts and flowers.  My cousin-in-law, a professional photographer, took this photo just after my family was escorted into the chapel where my tender-hearted wife and I would give the most painful address of our lives. 

“My little boy’s journey through life and death has taught me to not ask why, but rather “What am I to learn?”  That, it seems, is the gateway to significance.  To think less about the why of things, and more about what they mean.”

— Christopher M. Jones | Mitchell's Journey

The last thing on my mind was this scooter that was left behind – so, weeks later, when I stumbled into this photo, I wept.  Then, I caught my breath and wept some more.  Vacant and alone, this ordinary image of my son’s abandoned scooter stood as a stark reminder of what really matters in life.  This was a moment of significance for me.   

I remember kneeling at Mitchell’s bedside just a few days before he passed away.  I remember almost everything, in fact, with vivid clarity.  To carry such vivid memories has been both a blessing and a burden.  With great sorrow I watched my little baby made of sand slip through my fingers and into the abyss.  As I sat by my little boy, who was struggling to breathe, and I ran my fingers softly through his hair and tickled his arms as we just talked about stuff that was on his mind.  My sweet ten-year-old only wanted to run, play and be like all the other young children he knew.  At one point during our conversation at the side of his bed Mitch lamented, with great feeling, how much he wished he could be like “regular kids.”  My soul, already broken, broke some more.     

With tears in my eyes and love pouring out of my soul, I said, “Oh, little Mitch, you are so much more than a mere mortal.  If only you could see who you really are and what you may one day become.  Just remember: our bodies are temporary, our souls are forever.  You, my little boy, are so much more than you know.”  Mitch smiled softly, closed his tear-filled eyes and drifted to sleep.  I kissed his face and then prayed to my Father that my back might be strengthened so I could carry such a burden as grief.  How heavy it would soon become, I knew not.  Soon, my legs would buckle and my hands tremble from the weight of grief.  The hell I knew was just a foretaste of what was to come.

A few days later my little boy was gone and I journeyed through the deepest, darkest recesses of the soul.  All that I thought I knew of sorrow … all my mental and emotional preparations for his death failed me.  I thought I was prepared, but I was not.  The grief I felt prior to my son’s death was merely a whisper.  A faint shadow.  A feather … as compared to the heavy and harsh realities of death.  New to this form of grief, I had to remember what I told my son, “Our bodies are temporary, our souls are forever.”  Though I know that the soul lives on, that knowledge doesn’t take the sting of death away.  It provides context and meaning, but it offers no insulation from sorrow.   Though I have also experienced a comfort and peace that defies my human understanding, those moments of heavenly peace come and go just like the tides of grief.   

I’ve heard it said, “Those who mistake success for significance, will lead a deeply unfulfilled existence.”  

My little boy’s journey through life and death has taught me to not ask why, but rather “What am I to learn?”  That, it seems, is the gateway to significance.  To think less about the why of things, and more about what they mean.

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Photo Credit: Scott Winterton

Mitch was barely home on hospice. The hourglass that counted down our precious days and hours was all but invisible, and we didn’t know if his little heart would give out in 5 days or 5 minutes. So we clung to each moment like a weary traveler might hang to a flask of water in a desert.

“I love that heavenly paradox: when we lift others, we too are lifted.”

— Christopher M. Jones | Mitchell's Journey

During this time, Candice Madsen, a producer with a local news agency (KSL), had been telling our son’s story on the news. She was professional and courteous … and most importantly, she was deeply compassionate. At one point, she sent me a message asking if a former BYU football player, Andrew Rich, might come over to wish Mitch well. During the height of his athletic career Andrew thought football was the most important thing in his life, but then he had a baby and, like me, his world turned upside down and right side up. When he learned of our little boy’s struggle, his heart turned to our son with compassion.

So, on this cold February night, Andrew brought the warmth of humanity into our home. He sat on the edge of our couch, next to Mitch, and shared a few photos of his little baby who also had heart complications as an infant. Then Andrew did what great humans do, he turned attention away from himself and encouraged a person in need. He told little Mitch how strong he was and that he cared. I sat on the couch and fought back a river of tears as I knew Mitch needed every ounce of courage and strength he could get. In truth, so did we.

After a while of conversation, Mitchell’s energy began to fade, and he asked to lay down. Natalie rushed over and scooped our little boy in her arms; his hands seemed so heavy. Just then, Andrew reached out and held Mitchell’s hand and squeezed it – as if to give him a hug. I saw a look of compassion and love in his countenance that warmed my heart.

Mitch was touched by his kindness and wondered why anyone, especially a stranger to him, would even care. He often said things like, “I’m just a kid,” struggling to understand. Later that night I sat on the edge of his bed as Mitch asked me why so many strangers took an interest in him. My eyes filled with tears as I explained that people care because they know how precious children are. Then, I could barely utter the words as Mitchell’s eyes filled with tears, “You, my son, are the very best part of me and I want to be good, just like you.” Mitch reached out his tired arms gesturing for a hug. We both wept, father and son, as we held each other – trying to lift each other’s heavy hands.

Mitch would have another good week ahead of him. He played with friends, spent time with family, and got to do many things he loved. I put my entire world on pause and tried to love this little boy with everything I had. It was a tender and fragile time: both beautiful and heartbreaking.

After that magical week, death came clawing at our door. Another week would pass, and Mitchell’s vitals would deteriorate as we felt death’s coldness breeze seeping into our home. Saying goodbye was terrifying beyond all description and broke every single part of me. Then came grief – a journey that would break my broken pieces.

I have spent the better part of 3 years processing the death of my child. I still grieve deeply, though writing has become my therapy and helped me process the meaning of things. Yet, in moments of deep grief, when my hands (and heart) feel especially heavy, I have learned to turn my attention to others, and I try to lift heavy hands, just like Andrew Rich. I love that heavenly paradox: when we lift others, we too are lifted.

May we spend this year in the service of others, lifting heavy hands; for we are all weary travelers and we are meant to help each other along the way.

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I knew time was short and midnight was near. Death was coming, and all I had was the moments that remained. How many moments left was impossible to know.

The ice upon which Mitch tread was terribly thin. His cardiologist said he was at risk of sudden death; so not a moment passed that I didn’t worry that very second might be my last. When I peered into my tender son’s eyes, all I could hear was the cracking of the ice beneath him.

“Dad, will you watch a movie with me?” Mitch said softly. Swallowing the lump in my throat, I replied, “I would love to, son.” Mitch grabbed his tiny puppy and whispered, “We can put Marlie between us and both cuddle with her.”

“I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.”

— Christopher M. Jones | Mitchell's Journey

Oh, we cuddled that night. We cuddled like we were the last two people on earth, bracing for a meteor to wipe us out. As Mitch snuggled into my chest, Marlie rested between us, ever faithful to her sick friend. Little Mitch was soon caught up in the movie … and as much as I wanted to enjoy the movie, I could not. All I could think about was the cracking ice and the deep, dark waters below. Tears streamed down my face, and my heart ached in ways I never imagined. I had never known such sorrow.

I remember saying a prayer in my heart in search of comfort, “Father, where is your hand in all of this suffering? Please, give me eyes to see. I have faith in you. I believe.” I learned years ago that “As soon as we learn the true relationship in which we stand toward God (namely, God is our Father, and we are His children), then at once prayer becomes natural and instinctive on our part.” And that, “Many of the so-called difficulties about prayer arise from forgetting this relationship.” The moment I discovered that truth, my prayers became more personal. More genuine. More effective.

The answers I was looking for didn’t come all at once. Peace would come and go like the ocean tide – and I was not spared from sorrow, neither was Mitch spared from death. But peace would come and give us a measure of rest. And when it came to having eyes to see, my eyes were opened, but slowly. Like mortal eyes, my spiritual eyes needed time to adjust – but soon I began to see tender mercies that I was previously blind to see.

I am no fanatic or a zealot, but there are some things I know, and I know them for sure. I know that despite our suffering in this life, we are never left alone … though we may be tempted to feel that way from time-to-time. God is never surprised or caught off-guard by the events that unfold in our lives. In fact, I’m convinced that Heaven walks before us and paves the way for tender mercies – so that we might find comfort in our hardships. But hardships are essential to our spiritual growth.

I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.

I miss this little boy. Though I would have done anything to keep Mitch with me, I have discovered things I did not previously see. The gift of sight, to see things right, is something I don’t take lightly. Peace, it seems, doesn’t come from things … it comes from what we see.

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I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.

On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.

Neither of us knew he had 48 hours left.

Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.

I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.

Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission. 

Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down. 

Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out. 

You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.

At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.