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A few years ago our extended family went on a group vacation.  It was a time of great excitement as distant cousins reunited and family bonds strengthened.  Mitchell always felt awkward and shy around others because his muscles were weak and he didn't have the strength to do what everyone else could.  He often sat in the background as a spectator – never wanting to impose his needs or wants on others – even though he would have done anything to be recognized and to participate.  More often than I want to remember I observed people look over him as if he were invisible. It is for this very reason this photo means so much to me. 

“This summer we will see a lineup of long-awaited superhero movies.  Each story selling the idea superhuman strength, epic battles, men (and women) dripping of brawn and testosterone are heroes.  But the real heroes of life aren’t laden with technology or smothered in dirt from far-off fields.  Real heroes are almost invisible to the eye and most often discerned by the heart.  They are among us living the lives of ordinary people.  They are the ones who take the time to love and serve others: to give a stranger a friendly smile or a compliment, a compassionate ear, or some anonymous act of service.  They are people who love and give freely with no thought of remuneration … whose only payment is the internal satisfaction they did good by being good.”

— Christopher M. Jones | Mitchell's Journey

 While at the airport an uncle reached down to invisible Mitch and placed him on his shoulders.  Together they flew down the concourse … arms open and soaring like a bird.  His uncle didn't care that other adults, strangers to him, could see and hear them. He didn't pretend to be so important or busy with adult things that he couldn't break decorum and be bothered with a child.  Only loved mattered.  And that is what he gave Mitch, in abundance.  Mitchie smiled and laughed and my heart exploded into a million pieces of love and appreciation.  For a moment, Mitchell was free … he was powerful.  For a moment Mitchell felt like a superhero.  As I sat back and watched this great man love my boy I shed tears of gratitude.

 Two [almost invisible] years later our little boy would die.  And all that Mitch hoped to do and become died with him. 

As his father I wanted so badly to put my superhero cape on and save my son.  After all, he thought I was a superhero ... but I was only mortal and I agonized that I couldn't save my little boy.  As it turned out, my little son was a superhero to me.  

This summer we will see a lineup of long-awaited superhero movies.  Each story selling the idea superhuman strength, epic battles, men (and women) dripping of brawn and testosterone are heroes.  But the real heroes of life aren't laden with technology or smothered in dirt from far-off fields.  Real heroes are almost invisible to the eye and most often discerned by the heart.  They are among us living the lives of ordinary people.  They are the ones who take the time to love and serve others: to give a stranger a friendly smile or a compliment, a compassionate ear, or some anonymous act of service.  They are people who love and give freely with no thought of remuneration … whose only payment is the internal satisfaction they did good by being good.

Mitchell’s Journey has revealed many superheroes that were hiding in plain sight – all across the world.  Many of you are superheroes to my son (and my family) because you reached out and loved him … and he felt your love and concern when the world became very dark and very lonely.  It’s one thing to love someone you know; but to love a stranger, that’s divine.

In every way that matters my little son … who hardly had the muscle strength to stretch out his arms … is my superhero. Despite his failing body he kept fighting with a smile on his face, hope in his heart and love in his soul. 

Mitchell taught me that to be a superhero has nothing to do with physical strength at all – but everything to do with heart.  While Mitchell lost his mortal battle, he has won the battle of the soul.

Originally Posted April 22, 2013

(Just a few months after Mitch passed away)

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.