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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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Last summer Ethan got a little motorcycle to tool around on. He loved the sport and his thoughtful mother arranged to surprise Ethan for his birthday. We did a great job selling Ethan that he’d never get one because it was too dangerous, etc. He had given up asking for one – which made the surprise all the sweeter. With the help of some amazing neighbors who helped source and assemble the motorcycle (thank you Seth Lloyd), Ethan had the surprise of his life.

Little Wyatt, who is now fast approaching the age of Mitch when he passed away, was so excited for his brother. Though he was anxious to enjoy a gift he never thought he’d get, Ethan looked at Wyatt’s big eyes and said, “Do you want a ride?” Wyatt smiled with delight as his older brother handed him his helmet. Carefully they drove down our cul-de-sac and as Wyatt carried with him an enormous grin. These are the kind of days parents live for. To see your child find joy is one thing, but to see your child give joy to another is altogether different. That is a satisfaction of a deeper sort. If I find deep joy in watching my own children love and lift another, how might our Father feel about us doing the same to each other?

Ethan has told me on several occasions that he wants to use the lessons he’s learned from his fallen brother to help others. At 14 years of age, he reads Mitchell’s Journey all the time and comes back to me with ideas, insights and self-discoveries. Sometimes I cry when I reflect on the things he says – for tender mercies abound. 

Ethan has learned to put his arm around Wyatt like he did Mitch. Every day he is shaping his little brother through kindness and brotherly mentorship. Oh, they’re not perfect. They’re just like any young brothers who tease and fight – they take things too far and their arguments sometimes seem to go on too long. They both have their strengths and growth opportunities, like all of us do. But the point isn’t that they stumble, but rather how they get back up again. Their forgiveness isn’t conditional. I love that.

To young Wyatt, on this warm summer afternoon, his older brother was a super brother-turned superhero. He inspired me just as much as his little brother.

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Happy Memorial Day, son. I remember you every second of every day. I visit often this place where your body lay. Strangely a place of peace and great unrest, slowly learning to live while coping with your death.

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The summer sun was about to fade into evening as my kids discovered a hole I was digging in our back yard. The freshly-turned soil was soft and as inviting to a child as a shiny playground or a new puddle on the heels of a summer storm. Like flies to honey, these little ones ran to the dirt pile to see what it was all about. Within minutes Laura-Ashley and Ethan were busy exploring the uncovered earth. Mitch found his way to them and plopped his little bum in the dirt and began to play with them. At one point, Mitch turned back at me and smiled as if to say, “Hey Dad! I’m one of the big kids now.” Mitch then turned toward his siblings and continued to squish handfuls of dirt with his chubby little fingers. 

Natalie and I were poor as church mice, struggling to launch a company and trying to make the most of what little we had. We learned early in our marriage that material things, though nice, never made us truly happy – in fact, we found that the preoccupation with things got in the way of that which we wanted most. So on this day, I found our children huddled around an ordinary pile of dirt having an extraordinary youthful experience, my heart skipped a beat or two.

In the background was an inflatable swimming pool on our trampoline filled with water. That was our inexpensive way of having a watery ruckus with our kids. I loved watching our kids bounce and slosh about in a pool that suddenly became a washing machine. I can still hear their giggles today.

There were many months we worried about how we’d make ends meet; each day was a step into the fog of the unknown. Not sure how we would to pay for the mortgage or even diapers … we agonized over how we’d make it. Although those times were difficult for our family … looking back, I miss the struggle. I miss our life back then. 

Though I thought my life a curious hell – facing an uncertain and turbulent financial future – I now look back on those hard times with fondness and a deep sense of appreciation. We could hardly pay for groceries – yet we had Friday night den parties with popcorn fit for a king. Our sippy cups were filled with a 50/50 blend of water and apple juice because that was all we could afford. Our kids didn't know or care … they were just grateful to have something – and so were we. Though our pockets were almost empty, our hearts were overflowing.

Sometimes I wondered in moments of hardship, “Why am I struggling like this? Father, will you help me?” Relief eventually came. Though we struggled in our wilderness, tender mercies were abundant – we just didn't have the eyes to see them at the time. Days felt like weeks, weeks felt like months, and months felt like years … but I can see now what our Father was doing to our family back then. We learned lessons we would have never gained on an easier road. In my heart and soul, I thank my Father and I wouldn't have had it any other way.

Today is Mitchell’s birthday. He would have turned 13. He died just before his 11th birthday – so young and innocent. Though I know his soul lives on, I miss my little boy in my arms. 

When I think back on this beautiful moment with my children, surrounded by worry and struggle, self-doubt and fear, I can see beauty in the struggle. I long for that struggle and the things it taught me and the moments it afforded me with my family.

Today I face a different form of poverty … one borne of grief. At least to me, grief is a form of emotional poverty. Yes, grief is an expression of deep love and longing for what once was … but it also tends to come at the expense of momentary happiness. Grief is not a choice, it is the price we pay for having loved someone deeply.

As poor as my soul feels, I know I’ll look back one day … at today … with fondness. For I will see, like I can see in my early years, what my Father is doing to me – and I will be grateful. 

This evening we’ll be taking our kids to the Olive Garden, Mitchell’s favorite restaurant. I’ll have his favorite Tour of Italy. Together, our family will laugh and remember the good times and cry a little about the hard times. Most importantly, we will be grateful that we had time.

We’ll then visit the cemetery to honor our little boy, who through his death, taught us how to live.

Happy Birthday, little boy. You are my struggle. You are a gift to my heart and soul.