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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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As far back as I can remember, Natalie and I always enjoyed having people at our home; we enjoyed serving those we love with a great meal, and we enjoyed good conversation even more. On this day, we had extended family over for a BBQ. It was a hot, muggy afternoon. The cousins were busy laughing in the back yard playing on an inflatable water slide. Little Mitch didn’t have a lot of muscle strength to do what the other kids were doing, so he stayed behind and wanted to be near me, which I loved.

“I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new. ”

— Christopher M. Jones | Mitchell's Journey

I was busy preparing our meal on the grill. My tripod and camera were on-the-ready to capture any moment that caught my eye. Little Mitch asked if he could wear one of my favorite hats that had artificial grey hair sprouting in every direction from the top. At the time, I didn’t have any grey hair to speak of, and it was one of my favorite hats. Since I’ve lost Mitch, I have grown quite a bit of grey hair; which to me is a visible testament to the price we pay for grief and heartache.

Mitch always wanted to sit next to me when I was at the grill. He’d sit on a stool and quietly talk to me about things that were on his mind. Sometimes he didn’t say anything at all. He just wanted to be – and that’s okay, too. Often, Mitch would make funny observations that were both insightful and witty.

I remember this summer afternoon so vividly. I also remember having a distinct impression this day that a terrible life storm was on the horizon and that darkness was near. I didn’t understand that feeling at the time, but looking back, I can see it was my loving Father preparing me … in effect, warning me, to make moments matter.

For almost 2 years following the death of Mitch, certain places in my home evoked the most tender feelings. Whenever I was at my grill, I’d instinctively look to my side hoping to see little Mitch next to me, only to find emptiness. I’d burst into tears, and my heart would break all over again. For a season, all I saw was emptiness, everywhere. I had an aversion to certain rooms in my home – for they reminded me of my absent son and those places became a source of deep pain.

Over time, however, I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new.

I think part of my grief was magnified because I wanted to go home … you know, the home I once knew and loved. Yet everything stood as a testament that I was no longer home and that I could never go there again.

Author Thomas Wolfe wrote a book, You Can’t Go Home Again (1940), where, among other things, describes how the passing of time prevents us from returning “home again.” On at least one level, it is a brilliant meditation on life and making the most of the time we have.

On my grief journey, I had to learn that I could never go home again … at least to the home I once knew. That time before with little Mitch was my old home. Today is now and that is where I’ve learned to live.

I chronicle my journey with Mitch here, not to fixate on yesteryear and on sorrow – but instead, I write my memories as though I were a weary traveler who discovered a treasure, a memory I wish to keep. I put it here for safe keeping.

Pain has been my teacher and has shown me how to appreciate my present. Whether through death or simply the passage of time, all that we have today will be different tomorrow. In a few short years, my children will have graduated from high school, and I will never be able to go back to this home I have now again. So today, I will live in my home … my current reality … and I will love that place and all that dwell therein. For on some tomorrow, I’ll have a new home, and I’ll learn to adjust once again.

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Mitch had passed a few hours prior and we each spent sacred time saying goodbye to our boy.  His body was beginning to change, and it was disturbing to see.  I was frightened by the spectacle of it all.  So, I called the funeral home and asked them to hurry.  Soon, in the dark of winter, I’d hear a soft knock on our door that would usher a kind of trauma we weren’t prepared to experience. 

“The death of a child is exactly similar to the birth of a child.  It changes you forever.  In the same way, your life is multiplied by their very existence, it is divided by their absence.”

— Christopher M. Jones | Mitchell's Journey

The funeral home employees were kind and professional and went reverently about their work.  They entered Mitchell’s room and slid a sheet under his body, then lifted my sweet boy onto a gurney, then strapped his body in.  They covered his cold form with his blanket – not to keep him warm, but to show respect for a little boy who had gone too soon.  I suppose the covered him, also, to soften the blow.

Natalie stood at the foot of Mitchell’s bed with a look of horror and disbelief on her face.  Indeed, it was a horror show.  In the long nights that would follow, my dear wife would weep and say, “I don’t want to live.” The long night of grief had just begun – and a long night it would be.  As a husband and father, I scrambled to keep myself, my wife, and children together.

In truth, I don’t need this photo to remind me of this horrible, yet sacred event.  The memory of this night is seared into my mind and soul – written in the most permanent of inks.  I keep it, however, not to wallow in sorrow – but to stay sober about life.  To stay centered in the heart and soul.

The other day I had a lunch appointment with an old friend and colleague.  We talked for a while and covered a lot of ground.  It isn’t my practice to talk of Mitch or grief with people unless they ask.  But, somehow our conversation turned toward Mitch, and we started to talk about life and loss.  My friend had lost his sister many years ago, and though he grieved her loss, he didn’t understand the degree of sorrow his parents felt.  He tried to understand – but until you experience it – it cannot be fully understood.

At one point in our conversation, I observed the spectators of grief – you know … the ones who, from the comfort of their own life say things like, “Isn’t it time to get over it?”  Or, “Just be glad you’ll see them again in the next life.”  These, and a million platitudes like them, only cut deeper into tender wounds of the soul. 

I said, “There is a kind of darkness one comes to know when they lose a child.  And when you walk through that wilderness, you eventually come out the other side a different person.  You change.  Suddenly, the world is different.  The pettiness of people and so much of what consumes society is both pedestrian and trivial.  It’s like someone who knows only simple math is trying to tell you how to solve an abstract problem with theoretical physics.  Suddenly, their level of understanding is elementary – and you are in graduate school, whether you’re ready or not.”

I went on to say that when I hear people talk of people ‘moving on’ I want to say, “Okay, here’s a thought experiment.  What if I told you to leave your young child (or grandchild) on the corner of a busy road and never look back?  What’s more, you only have a few weeks to stop loving them – then, you must never feel after them. You must stop talking about them and act as if they never existed.  Move on.  Get over them.  Impossible, right?  Why?  Because we love them – and that love is forever.  So it is with grief.  Yet, so often, grief feels a lot like love with nowhere to go – and it hurts to hold it in.”

We both had tears in our eyes.  He could see my pain begin to surface and he said, “I think I’m beginning to understand what my parents felt … and feel.”  I smiled and told my friend that grief, like love, doesn’t end.  Though our conversation was met with tender feelings – it was also healing and bridge-building.  Talking helps.  Remembering can be soul-soothing.

The death of a child is exactly similar to the birth of a child.  It changes you forever.  In the same way, your life is multiplied by their very existence, it is divided by their absence.

A grief remembered is only love trying to find its way.

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I took this photo at a family function today and was overwhelmed with feelings of love and gratitude for my wife and kids - at the same time, I felt an empty longing for little Mitch. What I’ve learned on my grief journey is that I can be happy and sad at the same time, restless and still, empty but full.

More than anything, I am in a place of peace and acceptance for all that there is, all that ever was, and everything that is yet to be.

I have more stories of tender Mitch I want to share - but I’ve spent the last few months focused on my family. Healing from the loss of a child, it turns out, takes more than a little time ... it appears to take a lifetime.

#mitchellsjourney #makeeverydaycount