Mitchell was not okay.  Sweet Natalie helped him drink from a straw as my sister held his body steady.  I took this photo on March 1, 2013, at 1:42 PM.  A few hours would pass before he ate his last meal and then slipped into a sleep from which he’d never wake.  By midnight, he was gone.

Just a few days prior, Mitch said in a slurry voice while lying in his bed, “I don’t think I can survive.”  He closed his eyes and we thought he was sleeping – unaware he could still hear us crying quietly at the side of his bed.  A few minutes later, Mitch trying to comfort his mother said, “It’s okay Mom.”

Last night marked the 10-year anniversary of my sweet child’s passing.  Ten years of grief.  Ten years of gratitude.  Ten years of growth.  Ten years of heaven and hell.

Something remarkable happened in his room that night.  As Mitchell’s body started to shut down, the muscles in his face began to relax in a way I’d never seen before.  Near the end, his face was almost unrecognizable.  His rib cage began to bulge – as though his heart had enlarged, and his body looked deformed.  Little Marlie, his puppy of only a few weeks, curled under his hand as if to comfort him.  I have a sequence of photos that show Mitch softly moving his fingers through her fur.  He couldn’t open his eyes anymore, but he would softly squeeze our hands when we spoke to him.

It broke my heart.  I struggled to find meaning in the moment as darkness surrounded me.  By this time, I’d been crying for days and my lungs were so very sore – it felt as if I had the flu.

As each hour passed, little Mitch inched closer to death and the spirit of his room began to transform into something that felt like a busy train station.  I felt the presence of others I could not see.  They provided no comfort to my weary soul – I only sensed a gathering.  Later that night, several different people came to our door and dropped gifts off for Mitch – unaware he was actively dying.  They send me text messages to let me know they’d dropped something off - and each, in their own way, commented on how they felt.  One of them said, “I don’t know what’s going on in there, but I felt like I was walking through a crowd of angels.”

I don’t pretend to know what happens in that place beyond the hills.  Any more, I have more questions than answers.  But I’ve also had experiences that I cannot question – only wonder in awe that there is more to our existence than meets our mortal eyes.

Since my little boy died, a large part of me has died also.  And I’m glad of it.  In the last 10 years, I’ve learned that we must die a hundred times during our life – if we’re to truly be alive.  I know so many good souls who go about their days checking boxes, living vein routines that seem more like ruts, going about their lives like zombies, yet thinking they’re alive.  Sometimes it’s easy to confuse existing for living.

“If writing was my therapy, curiosity was my therapist. Curiosity taught me to ask better questions – questions that sought to understand the meaning of my experiences and see connections between them. ”

— Chris Jones

Grief, which is trauma in slow motion, transforms us for better or worse.  Some point to their trauma as an excuse to be hateful, disloyal, or stuck in a lesser life.  Others find ways to use that hardship as if to polish the gemstones of their soul.

Early in my grief journey, I learned to surrender to grief moments, not fight them.  I didn’t just surrender to grief moments; I made time and space for them, often when writing.  Each time I grieved, a part of me died, and a new part of me came alive.

If writing was my therapy, curiosity was my therapist.  Curiosity taught me to ask better questions – questions that sought to understand the meaning of my experiences and see connections between them.

For years, wave after wave of sorrow came crashing down, thrashing my soul.  Sometimes it was hard to breathe. But I surrendered my mind and heart to the ebb and flow of the emotional tide.  Each time, I’d find my way to the shore.  Sometimes, I’d find others drowning in grief and I’d tug them back to shore, too.

10 years have passed.  Every so often, the realization my son is gone hits me.  It’s not like I forget.  I think about Mitch every day.  But knowing something has happened and feeling its consequence are entirely different experiences.  When that realization hits me, when it brings me to my knees, I do my best to surrender to all the feelings.  Rumi taught, “The cure to pain is in the pain.”  I have experienced the wisdom of his words.

Grief is so much more than being sad.  I’m not even sure it’s an emotion; I know it feels like it, but I sense it’s much more than that.  As far as I can tell, grief seems to be a spiritual and mental struggle to adjust to absence.  We don’t grieve for things we have – we grieve for what we lost.

Today, my heart grieves for Mitch.  Yes, yes, I’ve heard it all before: “Do not cry, I’m in the other room” or “Life is but a blink in the eternal scheme.”  Those platitudes are hardly useful to those who grieve.  The last time I checked, life is the longest thing I know in mortality.  If you want to help those who hurt, don’t talk to them about blinks and eternalness.  Instead, honor their suffering by mourning with those who mourn, in the present moment.  Hold space for their brokenness as they squint through tears to find their broken pieces and put themselves back together again.  The battle of grief is difficult enough – and is made more complicated when those close to us don’t honor the pain that is present.  Recognize the sacredness of suffering – and you may discover something special about your loved ones and about yourself.

So much has changed since I lost my boy.  The truth is, I’m more joyful than I’ve ever been.  I see further than ever before.  The pain that carved caverns in my soul has made space for a kind of joy and aliveness I never imagined – not even in my sweetest dreams. 

Today, I sit in the contrast of grief and gratitude as I celebrate my little boy.  My deepest teacher.

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On his final day, Mitch slipped into a state of near unconsciousness. His body was motionless, his breathing soft as a feather and pillow stained with a feverish sweat; by stark contrast, the only sign of life was his heart pounding violently through his ribcage. Natalie placed her hand softly on his chest to comfort him. Occasionally, we’d get a soft hand squeeze from Mitch that signaled he could hear us. But Mitch was slipping through our fingers like a baby made of sand.

Although our hospice nurse told us what to expect over the next several hours, we discovered there is never any real way to prepare for the death of your child. Until that fateful moment, it’s all an abstraction. The deeper truth is there’s never a single moment you confront the totality of death. Instead, grief visits you each day as you learn to cope with layers of sorrow for years and years … and years.

My heart broke for my sweet son, surrounded by all his boyhood treasures. The bitter irony was Mitch looked to his future with youthful enthusiasm; what he thought was a beautiful sunrise on the horizon of his life was, in reality, a darkening sunset.

As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could.

This image was the moment I realized the sun in Mitchell’s life had disappeared behind the mountains – never to rise again.

Medicine failed us. Hospital bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last-minute interventions were too little, too late.

I suppose there are a million and one reasons I could be angry with people, medical systems, and God (or the Universe) for all that’s happened. But I am not. I am only grateful. I am grateful for what I did have, for I had a chance to love my little child for 10 incredible years. He became my friend, and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.

On my son’s journey through life and death, there were many times I cried out in my mind and heart, “Oh, this hurts. God, where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered if the night would ever end. I had never known a darkness so pitch, a grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles. My eyes, scared with tears.

Years later, I can say with confidence there is light on the other side of all that darkness. That’s not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me – and for that, I’m grateful.

The question I hear over and over from others is, “Why?” I’m not sure it’s possible to know why we experience what we do. If you’re a person of faith, whether we settle the question ‘Is God the author of our suffering?’ or not is immaterial. If our suffering is caused by other means … whether from our own poor judgment or the harmful choices of others or perhaps our suffering is simply a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.

Despite my heavenward pleas to spare my son, a little boy I loved with all my heart, I now find myself on the other side of death. What I do next with my harsh reality matters. I can shake my fist at the heavens or universe in anger – but that won’t change heaven or the universe. Not in the slightest. That kind of rage will only change me … and probably for the worse.

Instead, I’ve learned to take a knee and search for understanding and wisdom.

The trouble with suffering is we exhaust too much time and energy asking the one question that can’t be answered. Rather than wondering, “why me?” I learned I was better served by remembering, “What am I to learn from this?”

I believe life is meant to be hard because the evidence is all around us. I also believe that suffering can strengthen us in ways we cannot imagine in times of comfort and ease. The key for me was to transform my torment into my teacher. That transformation didn’t lighten my sorrows – it only gave it context, meaning, and purpose.

Losing my little boy reminded me that we do not take our earthly treasures to that place beyond the hills. We only take who we are and what we’ve become. That’s everything we keep when all is said and done.

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Tucked away in a quiet corner of my home, deep in the shadows of a bookshelf, is a mold of my son gently holding my hand. This artifact is as close to seeing Mitch in physical form as I’ll ever see again in mortality. It's hidden from view, not because it isn’t special – but precisely because it is. I keep it tucked away so it can be safe from unintended harm.

This mold was taken just before Mitch came home from the hospital on hospice. If you look carefully, you’ll see a puncture wound, in the form of a small bump, on the back of Mitchell’s hand. It is just above his wrist, bearing a mark from an IV that had recently been removed. Were you to see this in person, the detail is breathtaking. Every bump, every little flaw, every little part that made him so beautifully human, was captured and preserved. Natalie has something similar with Mitch – except in that mold, a Band-Aid covers his IV wound, which makes it even more tender and unique.

“I discovered sometimes you can’t make sense of suffering, but you can make peace with pain. When that happens, it’s not that you stop hurting; you simply learn to live with longing. ”

— Christopher M. Jones | Mitchell's Journey

At the time these molds were taken, Mitch didn’t know the doctors said he had days to live – and I’m pretty sure he just thought mom and dad were being weird. But then again, it always seemed he knew more than he let on. He not only had a look of knowing in his countenance, but he would also say things from time to time that revealed how deeply perceptive he was.

When I look at this life-size statue of my son and me holding hands, I see several conversations at once. First, a whisper between a father and his little boy, “I love you, son, so very much.” Then, “I love you, too, Dad. I know you’ll keep me safe.” At the same time, because I knew my son’s deadly secret, I see a one-way narrative, “Sweet boy, we’re almost out of time. Let me hold you before it’s too late – for tomorrow, I will miss you forever.”

The final unspoken narrative, at least to me, is symbolic of two souls drowning in a sea of trouble.

At least to me, this statue with my son contains a deeper metaphor; that of two drowning souls trying to comfort each other in their hour of need. As Mitchell’s life was being swallowed up by the sea, I felt like we were both drowning, only differently, me in grief and Mitch to biology.

My wife and I knew what was about to happen, and we felt like we were drowning in grief. Yet, we didn’t know how deep and dark those waters would soon become. As terrifying as grief was at the time, we were still splashing in the shallow end of sorrow. Deep grief would eventually come, years after the loss of Mitch.

Before I knew it, little Mitch was gone, and my wife and I were left feeling empty.

A few months later, the board of a company I was running pitched in and sent our family to Hawaii to get away and perhaps heal a little.

One night, while my family and I were on the shore, I took a photo of the sunset (seen in this image) and wrote the words, “Good night, little Mitch. You are always on my mind. And while I know you're not lost at sea, sometimes in my heart, you may as well be.” Then, Mark Allen, a thoughtful and inspired friend, commented on my post: “Consider him your lighthouse now... so you can make it back home...” I was grateful for his words of compassion and faith.

I’ve spent the last 7 years gathering up my broken pieces, healing one grief moment at a time. I’ve felt my way through the darkest shadows of death and tried to make sense of suffering. I discovered that sometimes you can’t make sense of suffering, but you can make peace with pain. When that happens, it’s not that you stop hurting; you simply learn to live with longing.

I still miss my boy. I think about him every day and wonder what memories we might have made. And when I see his childhood friends in our neighborhood, almost young adults now, I marvel how fast time has passed.

I still wonder what happens on the other side of life. You know that place over there … on the far side of the sea. Sometimes the waves of grief are so great they completely swallow me. Other times I wade softly in the water, smooth and placidly.

The struggle to keep from drowning has made me stronger and given rise to a different kind of me. I’m still flawed and tread water… but I see the world differently… thanks to my son, somewhere over there … on the far side of the sea.

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.