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.

The night before Mitchell passed away, we sensed time was running out. As the sky quickly darkened, the air grew eerily cold … and with each breath, we felt a heavy, somber feeling grow within our hearts. The abyss that was inching to devour our son had its mouth stretched wide and was beginning to swallow him up.

We were preparing to cuddle with Mitch in his room and read him stories to comfort him when we received a call from his best friend and next-door neighbor who wanted to see if he could play. Unaware Mitchell was already slipping away, coming in and out of consciousness (mostly out), we asked this young boy if we could speak to his mother. We told her Mitch didn't have much time and that perhaps her son would want to come over one last time. Within a few minutes of that call, this young boy came over to say goodbye to our baby, his best buddy.

Mitch absolutely loved Luke. Whenever he heard his friend knock on the door, Mitch would yell out, "Lukey!!!" Mitch was always excited to spend time with him … so this last visit would mean more to Mitch than I think Luke realizes to this day.

What I then witnessed in the quiet of Mitchell's room was the most tender interaction between two young boys I have ever seen. It was a sacred exchange between two boys made of clay; before my eyes, each being shaped by experience, hardship, sacrifice, and love.

Lying on the bed was our young boy, much too young to die. Standing next to him, another young boy holding his hand, bearing his young soul … much too young to say goodbye. It was not my place to ask God why such heavy things were required by the hands of these two innocent souls. Instead, I began to ponder deeply and pray in my heart to understand what we were meant to learn from this hardship.

These aren't the only two children to experience this, and they won't be the last. But they were our kids … and we loved them so. It hurt so very much to see.

This young boy, who had loved Mitch like a brother and faithfully served him with all his heart, told Mitchell how much he meant to him, that because of Mitch, he learned what it meant to be a true friend and that he would never forget him. Luke struggled to hold back the tears; his voice was broken with emotion as Mitchell lay unable to move or speak. His eyes barely open, my little son listened to tender words of affection and friendship. My wife and I wept as we witnessed love and friendship in its purest form. I knew that Luke, Mitchell's faithful little friend, was breaking inside.

Afterward, I hugged him and told him how much my wife and I loved and appreciated him. I told him I was sure if Mitchell were able to speak, he would tell Luke that he loved him like a brother and that he appreciated how he was always there to help him when his muscles were too weak and how much it meant to him that he always cheered him up when he was sad. I told Luke that he taught Mitchell and his parents what it meant to be "your brother's keeper" and that we were so grateful to him.

Later that evening, I couldn't help but think of that tender experience between these two young boys who were forced to grow up much too fast. I pondered the meaning of human suffering and the difficult experiences we sometimes must endure. I have learned to appreciate an old Jewish proverb, "Don't pray for lighter burdens; pray for a stronger back." It would seem that in all religious texts, no matter one's religion, God makes no apology for pain and suffering. In fact, I have come to understand there's a sacred relationship between suffering and spirituality if we learn to listen and endure it well.

The burden of losing my precious son has been heavy; so much so, I found my knees trembling, hands shaking, and my soul weary with grief. There exist no words in the human language to describe the depths of this sorrow. It is simply, utterly, bewilderingly heavy. But, like all suffering, the sting of that pain can make way to deeper compassion toward others, a greater capacity to love, a stronger desire to reach toward God and understand the greater meaning of things.

The truth is, we are [all of us] no different than these two little boys. We are all made of clay. And with each choice we make, each reaction to events in our life, we carve out something beautiful or something hideous – something that loves or hates. We need only look at our own life experience to know this is true … we have all seen some let the clay in their hearts harden and become brittle or unmovable. Others allow the tears of suffering to keep their clay soft and pliable.

Nine years have passed since this sacred evening, and in many ways, I have made peace with pain. That's not to say that it doesn't hurt; it does. The difference is I've come to accept deep pain is part of me now. As such, I allow it to come and go like a houseguest to my heart. Even if I tried to lock the door, pain knows where the key is and always finds a way in. At least for me, making peace with pain means grief can come and go as it needs – and with each episode, I gather up my tears and do the work to keep my clay soft and my soul pliable.

Tonight, on the anniversary of my son's passing, I celebrate my Mitch with a potpourri of grief and gratitude and a promise to Heaven and to my boy that I will never forget the tender lessons he taught me. Most importantly, I promise to use my hurt to help others as long as I live.

Time is a slippery thing. One minute you think you have heaps of it, then on a Tuesday, you look back and wonder where it all went. Or, in my case, tragedy struck, and I was left dizzy with grief, wondering how I made the most of the ten years I had with my son.

At this moment, we were rushing Mitch to the ER. About an hour earlier, his stomach was writhing so much Mitch nearly passed out. I had never seen a child in so much pain.

Mitch rolled the window down a bit and hung his hand on the glass. He had a look on his face that was so very far away. I wondered what he was thinking. When I asked him, Mitch said softly, “Not now. I’m thinking.” To this day and forever, I’ll wonder what he was thinking.

A deep fog was rolling across the valley, and by the time we reached the hospital, we couldn’t see much of anything – which felt like a living metaphor. This photo nearly marked the beginning of Mitchell’s end.

“While we wait for life, life passes.” Lucius Seneca, a Stoic philosopher, said that about 2,000 years ago. Two thousand years ago. It would have been neat to know that 20 years ago, when I was a young father trying to find my place in the universe.

However much I tried to be in the moment as a husband and father, I failed more than I succeeded. Sometimes my heart is heavy over my countless moments of inattention, distraction, and procrastination; in my own deep work with grief and healing, I’ve learned how to turn regret into resolve. I can’t fix the past, but I can be in the present – and that will heal an otherwise painful future.

I don’t mean to sound so dramatic – as though everything is monumental. At least for me, being present has taken on a more hopeful meaning. How many of us have thought to record the voice of our little ones and said to ourselves, “Great idea, but I’ll do it later,” only to realize four years have passed and that tiny, helium-filled voice is deeper and more mature? It seems that even when we recognize THAT, we put it off. Then suddenly, our kids become adults, and those opportunities are irretrievable.

Whether we’re losing our loved ones to death or time, it’s the same. You will never have now again. We only have this moment – and what we do with it matters. This isn’t an original idea – but the realization (the awakening to it) is a revelation we’ll all have – hopefully sooner than later. At the deepest level, it seems like only the dying are the ones that awaken to how precious time is – and for the rest of us, we draw from an invisible bank account, never knowing the balance.

Time is a fast-moving river. We don’t often realize how fast it’s moving because we exist in the river of time – in the same way, you can be sitting in a car going 85 mph and not sense that you’re moving. In the same way, we don’t realize we live on a planet that’s spinning about 1,000 per hour, and when we lay our head down to sleep, we’re orbiting the sun at an average speed of 67,000 miles per hour (that 18.5 miles per second). Even still, our solar system is orbiting the galaxy at about 490,000 miles per hour, and the galaxy in which you now live is moving at about 1.3 million miles per hour into the immensity of space. Mitch loved stuff like this, and we talked about it often.

The point is we have no real sense of how fast things are moving … including time. For that reason, I’ve found it helpful to remember that it’s always later than you think. That invisible bank account from which you draw your minutes and hours is finite. One day your account will be empty. You’ll marvel at how fast it went, wonder where you spent it, treasure where you invested it, wince where you squandered it, and wish you had more of it. The prayer of the dying is almost always, “I wish I had more time.”

So, just a few weeks after I took this photo, I found myself kneeling by Mitchell’s side – the candle of life flickering out before my eyes. I’ll never forget how I was awakened by a force unseen. I was sleeping on the floor next to him. I was so tired. Then, suddenly I was wide awake as though someone shook me. I had an impression that felt like an emergency. I knew at that moment I needed to tuck Mitch in. I placed my hand gently on his chest, his heart barely fluttering. I told him I was so proud of him and wanted to be like him when I grew up. I still do. I told Mitch he could go when he was ready and that his mother and I would miss him, but that we would be okay. I whispered other sacred words, father to son. I kissed his face pulled his blanket around his shoulders just how he liked it. Although his body and senses were all but shut down, and what I did and set probably felt like a distant dream, I think he was hanging on for permission to go. I believe he heard me and felt my love for him. That was my last act of love.

Thirty minutes later, he was gone.

That thing you need to do. The words you need to say. That love you need to show.

Do the thing. It’s later than you think.

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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.