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Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.

“When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.”

— Christopher M. Jones | Mitchell's Journey

I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD. 

Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.

At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face. 

I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere. 

I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.

Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present. 

So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.

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As many of our followers know, we had a fundraiser earlier this spring which enabled #mitchellsjourneyto help other families affected by muscular dystrophy, as well as support programs that help kids and parents alike. Among the program's we have sponsored, we donated $2,000 to MDA to sponsor a fishing and swimming excursion at this year's summer camp. 

Mitchell loved swimming and fishing, so sponsoring these activities was a perfect opportunity to help boys in memory of our own. These fishing and swimming programs spread over the two week camp for both young and old DMD participants. 

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As I was taking photos Natalie pointed to this young boy fishing. He reminded us of little Mitch in so many ways. From the way he spoke out loud (to himself), to his facial expressions, we saw our little son. My heart broke and melted all at the same time.

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These are just a few of the young children that got to participate in the swimming program. Nothing was so rewarding as to see these young children who struggle to walk and play like regular children suddenly enjoy a sense of weightlessness and freedom by playing in the water. I think that is one of the many reasons Mitchell loved to swim.

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This was my sweet wife sitting by the pool watching the children play. Though she wanted her little son there, it brought her some comfort to help other children enjoy activities our son could not.

Thank you to everyone that supported our Miles for Mitchell run earlier this year. Thanks to you, because of your support, we've been blessed with opportunities to serve other families that struggle. We'll post those stories soon.

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My beautiful daughter volunteered to be an MDA counselor this summer. This is the little boy she was assigned to be with all week. He is totally and completely adorable. My daughter, knowing his fate, does all she can to help him enjoy ... everything. A few moments after shooting this photo I happened to film them as he tried to fix her hair. I could tell he really felt safe around her and wanted to reciprocate her loving kindness. 

There is something magical about service. I have a deep suspicion that most of what troubles the world today could be solved if we all stopped and took time to serve one another. Not necessarily because the act of service will change the life of the recipients as much as it changes the life of the giver. The more we give the more we change. It seems to me that the world has it all backwards: we do not change the world by trying to change it. We can only change the world by changing ourselves, from within. The world is merely an outward reflection of our inward convictions; and the fastest way to change us from within is to serve others. 

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Mitch had just finished having an annual checkup at Shriners Hospital. I was there with my wife to let Mitch know I loved and supported him. With very few exceptions, I was always there. I never wanted my son to turn around and see and empty chair where his daddy should have been. I wanted him to know I was with him every step of the way. It has always been that way … until his very last day.

As we were leaving the hospital I asked young Mitch if he’d like to go to work with me. He smiled softly and nodded yes. My heart leapt from my chest.

While driving to the office an old friend and colleague who owns a simulation business asked if I could stop by his office to discuss some upcoming projects. I told him I had my son with me but that I’d be glad to. He was not at all bothered to have my little one around – in fact, he welcomed it. This good man was a father, too, and had the same family values I held so dearly. 

We met briefly in his conference room and discussed some matters at hand. Sensing business could wait and that there was more important things to do, Reg leaned forward toward Mitch and said, “Hey Mitch, do you want to drive a real simulator?” Mitch was shy and didn’t want to intrude – but the little gamer in him desperately wanted to drive a real simulator. With that, my colleague and friend escorted Mitch to a warehouse attached to the back of his office. This was where he built prototypes. This good man and successful entrepreneur recognized an opportunity to lift a little boy’s heart and expand his horizons.

To think he took time for Mitch, to let my boy know he mattered enough to take time out for him … that warms my heart and soul. It stirs within me a desire to do more of that for others. He didn’t just give Mitch a gift that day … Reg gave me a gift; a gift that still comforts me to this day. I can still see in my mind the smile on my son’s face as we drove out of his parking lot. Mitch said, “Dad, that was awesome!”

Fast-forward a few years and I received an email from this good man … almost exactly a year after my son had passed. He said he felt prompted to send me a message that might bring comfort to my heart – a heart he knew was weary with grief. 

“Dear Chris,

I hope I am not trespassing on your privacy. I have been thinking of you this month and was prompted to write this that it may offer some comfort to you to know that your well-being is thought of by others …” 

The letter continued to offer compassion and then he recounted some of his own experience with grief and loss.

He described how he was in Heathrow Airport after completing a project in England and was about to begin his journey home. Prior to his flight, Pan Am located him and told him to call home immediately. He then learned his youngest twin daughter, Valerie, had passed away. I wept as I read his words … how he described his feelings of helplessness, guilt, vulnerability and so many other emotional horrors I knew all too well. My tears didn’t spring because of my own loss … I cried because of his. I knew his heartbreak and I was so sorry to hear how much he hurt. My tears were tears of empathy and compassion. Yet, in his very message, he was doing the same for me.

Once again, I experienced the supernal doctrine of mourning with those that mourn. What a powerful principle of hope, healing and a taste of heaven above … to care enough to feel another’s hurt and love.

The more I examine my life, the more I’m convinced everything matters. From trivial pursuits to things of deep importance … everything matters. The key is in knowing and pursuing what matters more. The most trivial of pursuits matter, not because they are important, but because they have the potential to keep us from things that matter more. Even still, when I consider all the things I feel are important, they are not all equal: the fact is, some important things matter more than others. 

I hope to always have discerning eyes – so I can know the difference. I am grateful for good friends, like Reg, who have compassionate hearts and good souls … who remind me to take time for things that really matter. In the end, that is all that really matters.