Some moments in life burn an image into your mind with permanent marker – and some experiences so hard to bare, they change the shape of your soul. This was one such moment that broke me and reshaped me in ways I'm still learning to understand.

My dear wife was dressing Mitch at the funeral home. Our mothers were with us as well as our oldest sisters; each of whom played a precious and sacred role in Mitchell’s life, and we wanted them to participate. Also, we were afraid of doing this alone.

Our once-little-baby had grown into a beautiful, funny, thoughtful, and caring young boy; yet there he was laying quietly on a table – motionless and frighteningly cold to the touch. My sweet wife, along with these other good women, reverently dressed Mitch in preparation for his funeral - where we would honor the good little boy that he was. Natalie was doing okay until she got to the last button – then grief washed over her like a title wave, thrashing her about on the inside. This was the last button she would ever fasten for our son – and that broke her heart. It broke mine, too.

I was a wreck that day. In fact, I was a wreck on the inside for many months afterward. Years, in fact. It took years to learn how to put my broken pieces back together again. Even still, I carry a father’s grief, and it is a terrible burden. Yet as much as I hurt on the inside, I know my wife hurts in ways I cannot imagine - for I am a simple man. She carried him, gave birth to him and made sacrifices in ways only a mother can - and with that pain and sacrifice comes a love unique to that service and surrender. So, I consider her grief hallowed ground. I silence my own tears so that I might wipe hers and scoop up her shattered pieces for safe keeping. And when I can, I try to gather mine.

“Maddeningly, some people are so focused on comparing grief they forget to simply honor it.”

— Christopher M. Jones | Mitchell's Journey

All too often I hear people suggest “there is nothing like a mother's love” – in a manner that seems to subordinate or dismiss the love of a father. In like manner, I hear less often the same of a father’s love as being more than anything else. It's almost as if they claim one love is greater than the other. Nothing could be further yet closer to the truth at the same time. They are correct in saying there is nothing like a mother’s love; in the same way, there is nothing like a father's love. Both are different, both are beautiful and sacred in their own right. But to suggest one is more significant or weightier than another ignores one immutable truth ... they are both parents and hurt deeply for the one they loved and lost. Maddeningly, some people are so focused on comparing grief they forget to simply honor it.

So when I look at this photo, I set aside my own sorrows and I reverence my wife’s. Her pain is as unique to her as her relationship was with Mitch. Her love was beautiful, vast, and deep.

The last button. It seems in life the hardest thing is always the last thing: the final lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or just looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different.

Neal Maxwell, a man whose intellectual and spiritual insight I’ve long admired once wrote, “We should certainly count our blessings, but we should also make our blessings count.” I love that statement because it reminds me of the importance of putting our blessings to good use - otherwise, we are throwing our gifts away.

Among the many blessings I have received in this life, Mitch ranks my sweetest blessings. Every day when I button my own shirt as I get ready for work, I vow to remember the blessing Mitch was in my life. And most importantly, to make that blessing count … to allow this experience to become an agent of change, for the better. This image, burned in my mind and heart, reminds me to make Mitchell’s last button count – if not for anyone else, myself.

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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.

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

Natalie and I spent today with some extraordinary DMD families in Dublin, Ireland. We were invited by Paula Kerr, of Join Our Boys Trust and asked to speak on hope: where to find it and how to keep it.