“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.

THE NIGHT YOU LEFT US
Today and tomorrow is a sacred time for my family. Just a few short years ago my son passed away on this very evening. We have healed a great deal since then, but there is still a sacred tenderness from a wound that still bleeds. A wound that still needs to be cared for.

This is a letter I wrote my son last year. A message of love from a heartbroken father to his son whose somewhere on the far side of the sea.

Dear Mitch,

The days leading up to your passing were surreal. It was cold outside. Snow everywhere. As the world spun madly on – everything as we knew it was coming to an end. It’s strange, you know, to live among a crowd of people yet feel like you’re worlds apart. That’s how it felt when you were slipping away. Everything on the outside seemed like a dream, oblivious to the hell on earth we were living. There we were, invisible to the world, living in the quiet of our home – and in the depths of our greatest nightmare.

With every dose of medication, you drifted further and further away. You knew what the medicine was doing to you – and you sometimes resisted it because you didn’t want to sleep. You wanted to be awake as long as you could – to live as much life as possible, as long as possible. I could almost hear it, you know … the crunch of the snow as death circled our home, every once in a while I could almost hear it gnawing and gashing at our door – violently trying to break through. I knew it was only a matter of time before death would take you away.

Just a few months prior, I wrote a letter to our family about your heart and how your life was nearing its end. I was careful never to let you see this letter because I didn’t want to frighten your tender heart. In the letter I wrote:

"Today Natalie and I sit with Mitch on the edge of an invisible cliff. He can't see it, but my wife and I can - and the mouth of the abyss is yawned and inching to devour our son. Yet, Mitchell looks out into the vast horizon unaware and envisions a long, bright future ahead of him. In his little mind, he is already making big plans. He wants to build a home next to ours with a tunnel connecting our basements so he and his dad can watch movies and make popcorn. He wants to work for his dad when he's older. He talks about his own kids one day and how he’ll raise them like we raised him. As he points to his vision of the future with youthful enthusiasm and a zest for life, he doesn't realize that he sits on the outermost edge and the ground from under him has crumbled away into the darkness – and his little body is hanging on by a pebble. What Mitchell doesn't understand is the beautiful horizon he sees is only a mirage, and in reality, the sun is setting on his own life."

It was surreal to be with you on the edge of life and death.

It was different than I imagined. More beautiful and at the same time more horrifying than I had a mind to know. But your time at home was filled with love and laughter – and for that I am grateful.

Your quiet, tender ways about you made your mortality and eventual death all the more painful to witness. How often I prayed for heaven to take me, instead of you.

Son, do you remember getting this gift? Well, there is a profound story behind it … a tender mercy put in motion almost six months earlier. I’ll tell you about that another time. But what I want you to know is – heaven was at work preparing the way for you. You were never alone. Not ever.

The people in your path were meant to be there. From your best friend, Luke, to your school teachers and your Bishop … it was as though everything was perfectly timed … just for you.

Your final weeks at home were a mixture of heaven and hell – all rolled into one. A beautiful agony I cannot to this day find words to describe.

There was a distinct moment I could no longer hear the crunching of the snow … the circling of death pacing around our home. I no longer heard the pounding and gashing of death clawing at our door. Death was in our home – and I couldn’t stop it.

Mitch, my precious child, I’ll never forget the time you wanted to be with me and play Legos. You were too weak to sit up on your own. You just wanted to be close … to lay on the edge of my lap and play like a little boy. Your muscles were so weak, and you were so tired that I had to hold your head in my hand to keep it stable. It was then I knew time had run out and whatever we had left was worth more than all the money on earth.

Time seemed to glitch. One moment it would stretch out … other moments went by in less than a blink.

Then, came the night you left us. The night we said goodbye. The night you slipped into the abyss, and all became dark. Never had I known such darkness, borne of grief and heartache.

As your mother and I were swallowed up in sorrow, we wondered how we could live without you. There, in a spiritual pitch of night, something happened I did not expect. As I prayed for understanding and pondered deeply on the meaning of life – almost as if against the backdrop of a darkened sky, I saw a little fleck of light. A tender mercy that until that moment I did not have the eyes to see. Then, the more I looked, the more I began to see – heavenly blessings that were meant for you … and some that were meant for your mom and me.

My eyes began to open. Over the next few years, what I began to see was beautiful. Like a heavenly constellation, these tender mercies, as if little points of light, showed that we are not alone – even in the pitch of night.

I’ll write you again, son. I have so much to share. I wish you were here – or me over there.

I’ve been traveling the broken road for five years now. Sometimes I travel through the wilderness of grief, other times the desert – where the scorched land burns my feet. And when I am lost, I have learned to look up and remember these points of light. For if heaven has played such a role in our past, you see, I can have faith in what is yet to be.

Sometimes I wonder where you are, exactly, on the far side of the sea. Maybe you will come to visit me – in the quiet of my dreams. And if you do, I want to know what you see.

Love,

Dad