The summer before Mitch passed away, Natalie and I took our kids on an adventure in southern California. Mitch, tired of using his motorized scooter, wanted to stand and go down the escalator by himself. For a moment, he wanted to feel normal again.

Before he stepped onto the escalator, Mitch said, “Dad, will go with me?” I smiled and said, “I would love to.” Mitch went first, and I immediately followed. A few seconds later, he turned his head to make sure I was with him.

“... being there isn’t just about being physically present … it’s about being emotionally and spiritually present with [our] loved ones, too. ”

— Christopher M. Jones | Mitchell's Journey

Mitch often made glances as if to say, “Are you there?” Though he was brave, he didn’t want to be alone. No child does. So, I always tried to be there for Mitch and my other kids. I was, and continue to be, less-than-perfect. In fact, I wish I could do a lot of moments over. But I tried, and I keep trying.

As a father, I knew it wasn’t practical to be everywhere, all the time, with my kids. I had to learn to do what my brother-in-law taught me years ago … embrace a philosophy of selective neglect. That is to say, when work requires, I have to neglect other aspects of my life so that I can support my family. And when my family needs me, I will set aside work so that I might be there for my wife and kids. It empowered me to say “no” … or “I can’t” … or “I won’t.” It also taught me to say, “I will,” “I can” and “yes.” Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things. If I were forced with an ultimatum to choose between work and family, work would lose every time.

Fortunately, life isn’t that dramatic, and most of us can find a healthy balance that works for our own family dynamic.

For every photo I have of Mitch, I have just as many of my other kids – each with a story of love and faith of its own. As I look through those photos, I can see each of my children doing this same thing as Mitch did in this image … possessing a quiet look as if to say, “Are you there?” From school programs to athletic competitions, my kids have always looked into the vast audience of onlookers to see a glimpse of mom and dad and to make sure they weren’t alone. To make sure we were there, supporting them. Loving them, not just in theory, but in practice.

Time and attention, service and sacrifice; those are the ingredients for love. These ingredients come from focus and effort.

For me, being there isn’t just about being physically present … it’s about being emotionally and spiritually present with my loved ones, too. Being present isn’t always easy for me; I worry about payrolls, client deadlines, employees, projects, investors and mountain of other things. At any given moment, I’m managing five catastrophes, 40 brushfires, and 1,000 mosquito bites. And that’s just the tip of the iceberg. For me, being present takes work. If I’m not careful, I can come home from work, yet never really arrive. Being present requires me to prioritize and remember that some things matter more than others.

So, on this sunny afternoon, I practiced selective neglect; I set aside work things and lesser things so I could give Mitch and my family all of me. They are my everything, and I can’t think of a time in my life I regretted living that core value.

As Mitch turned his head and glanced at me from the corner of his eye, he wanted to know his father was with him … that he wasn’t alone. I knew Mitch was in trouble. I also knew time was short – but how short, I knew not. I only knew I had that moment, so I gave him all of me.

I am guilty of many imperfections, and I wish I were a better human than I am. And while I try to sort out my own personal growth, I will always try to be there for my family, however imperfectly. When my kids turn their head, I want them to see a familiar face smiling back at them, loving them and cheering them on.

“Hey Dad, what’s that?” Ethan said pointing to a star. In an instant, my hallway went from routine to reverent as I described a series of blessings that came into our lives during an especially dark time.

In my hallway, just outside my office, is a 7-foot image of what look like constellations. It’s a visual representation of some tender mercies (or points of light) I’ve seen on my life-journey, thus far. A few years ago, I wrote an essay entitled “Nightfall” where I described the spiritual darkness that immediately followed Mitchell’s passing.

I wrote, “With all the lip service we give our religious beliefs, there is nothing so exacting as to see your child die and then to peer into the dark abyss of death. I have been taught that: "Faith, to be faith, must go into the unknown ... must walk to the edge of the light, then a few steps into the darkness." My son's journey, Mitchell's Journey, has forced my wife and I to step into the darkness … a darkness that is as heavy as it is pitch.

Yet, I discovered something in that darkness. When I allowed my spiritual eyes to adjust and look upward, I started to see the stars. Against the backdrop of all that is black and frightening, I can see little flecks of light, tender mercies that were always there but I didn't have eyes to see them. And the accumulation of these tender mercies presents themselves like heavenly constellations so I can find my way. If I look down or to the side, all I see is darkness. Like ancient navigators who looked to the heavens for bearing I can see the fingerprint of God in all that has happened, and I now have a sense of direction. I know we're not alone.

To be clear, it is still nightfall and my heart is heavy with a sinking sorrow. There are days that are blacker than black, and the waves of grief threaten to pull me under. But when I look to the heavens I can see.

I can see.”

Just a few days after writing that essay, I began to make a star chart outlining the undeniable, sometimes unexplainable, blessings that came into my life. Since then, I’ve developed much larger star chart plotting an even more complex tapestry of light, I’ve created a workshop aimed at helping people identify their own points of light and a guided journal. Soon, I’ll begin my deepest life’s work – to build an app that will help people chart and journal their own points of light through the metaphor of a star chart.

This project is among the most sacred of my life’s work – taught through Mitchell’s life, death and my subsequent search for meaning. I’ve been patiently searching for the right time and people to join me in seeing this vision through – and I think the stars are beginning to align.

Ethan, who was Mitchell's big brother and best friend, is now almost 19 years old. As a young adult, he's learning to look back on his life and make meaning of his own journey, heartbreak, and faith. Seeing his life like a constellation helps him see with new eyes.

I have written a lot of unpublished content on Mitch and the topic of tender mercies/points of light and will share that material soon. But for now, I'll say this: when I look at my personal star chart, which is a spiritual chronology of good fortune, hardships, and divine interventions, I can take courage that however dark and unknown my future may seem, things will be okay. Somehow, some way, things work out.

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I had lunch with an old friend recently and he shared a sacred moment he had during a time of deep personal struggle. I grabbed a napkin and quickly wrote his words down. He said, “I wept because I knew it wouldn’t last.” I was struck by the haunting truth of those words. Indeed, moments never last. Health and youthful beauty fade, over time. Even life doesn’t last. If my son’s journey through life and death has taught me anything, it’s that virtually everything ends, in the end. At the same time, I’ve discovered some things are forever.

“... life doesn’t need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.”

— Christopher M. Jones | Mitchell's Journey

This photo was taken during my Camelot years. Life was kind and my cup was running over in so many ways. Even still, I was a conscientious photo-taker because in my heart, I knew deep down nothing would last – that everything was changing. I realized early that photos would become my time machine. My journal. My compass.

On this day, young Mitch and Ethan were walking out of a movie theater giggling about the movie they just saw. I couldn’t help but capture this brotherly moment. I loved listening to their young minds at work. They were so funny, and they reminded me the world can still be innocent and kind. At this point in his life, Mitch had enough muscle strength to walk to the car, which was parked nearby, but he couldn’t go much further than that.

The way Mitch walked seemed almost ordinary to the layperson; but to those who knew DMD, his way of walking was unmistakable … a kind of flashing neon sign signaling the biological catastrophe that was slowly unfolding in his body.

When I look at this image, I can almost hear my boys giggling. I’m grateful for photos like this because I get to go back in time … to moments like this. I get to say to myself, “I’m grateful my children happened.”

About a month ago I had a heartfelt conversation with Ethan, who is almost 19 years old. He looks nothing like does in this photo; his boyish features have all but faded and given way to the likeness of a grown man. Over the last few years, Ethan has grown into a stalwart soul who is deep, insightful, talented, kind-hearted, and in search of meaning and purpose. I am so proud of him – not because of what appears on the outside, but for what lives inside.

As we sat on the couch, he began opening his heart to me. I could tell he wanted to talk. I sensed grief was just beneath the surface of his soft smile. I asked him, “What’s on your mind, son?” Then, his eyes welled, his voice cracked – and the flood gates opened. He told me how much he missed Mitch – even after all these years. I was reminded of the tender bond these brothers shared. They were the best of friends – and that is a space I hold sacred and with a reverent heart.

While part of Ethan ached to have some do-overs with Mitch– more importantly, he wanted his life and future to matter. Deep down, he wanted to honor his brother’s short life by the way he lived his. Ethan’s emotions were a mixture of looking back, being present, and thinking about his future. Just as it should be.

As I listened to Ethan’s searching heart, I was reminded that some things are forever. The love between siblings can be one of them. I am sure during Ethan’s final hours, many years from now, long after I’m gone ... when old age has taken its toll, he will look back on his life and still remember his brother with fondness.

That is one thing I admire about Ethan; he’s not bitter that his brother was taken from him – but instead, he’s grateful their lives were woven together – even if only for a short season. He's discovered life doesn't need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.

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Parenthood has been the most difficult yet rewarding experience of my life. I wish I could say I did it perfectly, but I didn’t … and I don’t. Nobody really does. Anymore, I don’t try to be the perfect parent … I just try to be loving and kind … to be the father and mentor I wish I had growing up. It is difficult at times, because I don’t know what to emulate – so I just try to be what I never had. I try to be what I wish I had and that’s the best know to do.

At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection.

When Mitch came home with a drawing or school assignment, I was always so proud of how hard he tried. I would hug him and kiss his face and tell him, “Great job, son. I’m so proud of you. Keep trying and you’ll better and better.” Always, there were imperfections in his drawings … but for him, he did it perfectly. Perfection is a relative term; for he was a young child and did the work of a young child. I didn’t care about flawless execution … at his age, I wanted him to be recognized for doing a little better than the time before. I wanted him to believe in himself and be proud of his accomplishments. As far as I can tell, belief-in-self is the bedrock of education and the scaffolding of character. At the same time, I am a strong believer in providing corrective feedback so that we might know where to stretch ourselves the next time. But, always, offering my children earned praise is high on my list of to-do’s as a father.

On this occasion my neighbor and friend, Jeff Winegar, offered to take our family to Snowbird so Mitch could participate in an adaptive sports program for kids with disabilities. Mitch was nervous about it because he knew he wasn’t very strong and that what little strength he did have would dissipate quickly. “What if I fall, Dad?” Mitch would ask me nervously. I assured him he wouldn’t be required to do anything for which he didn’t have strength and that they had something special for him – so that he would be safe and have fun. Mitch sat in a small carriage attached to two skis. Behind him were two purple tethers which allowed an adult to ski behind Mitch and control his speed down the mountain. All Mitch needed to do was to lean right or left as he decided where he wanted to ski down the mountainside.

I asked my friend Jeff to be on tether while I skied backward to take a million photos of my son. I loved looking at Mitchell’s expressions of glee as the cold wind rushed against his rose-colored cheeks. At first, I saw an expression that seemed to say, “This isn’t so bad. I’m not scared anymore.” Then later, his face seemed to say, “I’ve got this! I can do it!” I was so proud of Mitch and overwhelmed with gratitude as I saw my son’s countenance filled with a new form of self-confidence. He couldn’t race down the mountain like an Olympian, nor was he required to; but he could bravely face the steep slopes and do what he could, with the heart of an Olympian. That is winning, too.

I remember kneeling in prayer that night thanking my Father for giving my son such a great experience. I also thanked Him for giving me the blessing of children - a gift for which I'm eternally grateful. Because of Mitch, each day I try to grow a little on the inside, just like he tried. If I color a little outside the lines, I recognize it and try to do better next time.

Maybe that’s the point of it all … to get better a little on the inside each time. Musicians do it, athletes do it, academics do it … nobody achieves greatness in an instant … but through getting a little better each time. And those who have mastered their craft will each say it comes from within. It always comes from within. Each day. A little on the inside.