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.

A few weeks ago, my brother and I agreed to summit Mount Timpanogos.  I was excited for the adventure because I’d never climbed a mountain before.  Even more, I remember Mitch tugging softly at my arm, deep in the evening shadow of Aspen Grove, as he pointed to this mountain and said, “Dad, I wonder what it’s like up there.  I guess I’ll never know because my legs are so weak.”  I hugged him softly and said, “Son, one day I’ll climb it and take pictures for you.”  My sweet boy smiled and tucked his head into my arms.

The next year Mitch was diagnosed with cardiomyopathy and in less than a year he died.  I forgot about my promise to Mitch because my heart broke and I was trying to keep him alive.  Then, after he passed, I was just trying to survive grief.  I’m still trying.

It wasn’t until my brother and I decided to climb it that I remembered what I told Mitch.  I didn’t say anything to anyone, because it was a promise I made my son.  I quietly printed a painting of Mitch and slipped it inside my backpack. 

View fullsize

On our first night, we camped at Emerald Lake and I took a photo of little Mitch and said a prayer in my heart, “Hey Mitch, it’s Dad.  I’m sorry I’m late … but I’m going to take photos for you. I hope you can see what I see.”

View fullsize

I learned a lot on this hike.  Firstly, I learned that I can do hard things.  I learned that I don’t like heights and I especially don’t enjoy standing on the edge of nearly thousand-foot cliffs.  I learned that it’s probably a good idea to train for hard hikes – whereas I jumped in before I was physically ready.  An indiscretion I’d pay for on the way down the mountain.  We’ll get to that in a minute.

View fullsize

Despite the difficulties of the hike, I was inspired by the majestic beauty of earth.  I loved the fresh air, mountain flowers, vast glacial valleys, and wildlife.  Had Mitch he been with me physically, he would have been in awe of everything. 

View fullsize

View fullsize

View fullsize

View fullsize

View fullsize

On day two, my brother and I reached the mountain summit.  The view was breathtaking.  

View fullsize

At the summit was also a small fiberglass storm shelter with autograph laden walls – I added the signature Mitchell’s Journey 2018.  In my heart, I said, “It took me seven years to get here son, but we did it, Mitch.”

View fullsize

View fullsize

A few hours later, we were back at basecamp.  My knee was starting to swell from a surgery years ago, and I knew I was going to be slow.  I didn’t say anything about it but told my brother to head down the mountain ahead of me because I was not going to be as fast as him.  As I started my slow descent, I began to walk strangely to compensate for my injury.  Doing that made my legs incredibly weak.  It was a struggle.  What should have taken me three hours, took nine.

There were times I wondered how I could go on.  I looked down the vast mountain valley, 4 thousand feet below and got discouraged.  “Oh, Mitch, I don’t know how I’m going to make it.”  But I remembered what my sweet wife taught me, “Just take the next best step.”  So that’s what I did.  I had to stop looking at the vast distance ahead of me and just concentrate on the next step.  It made all the difference.  Though I started to walk like a drunken toddler, I looked at the ground and said to myself, “Okay, I have the strength for one more step.”  One step turned into two steps, and before I knew it 2,000 steps had passed – then I’d turn around, startled by the distance I covered.  If ever there were a metaphor for grief, this is it.  We can look across the vast valleys of sorrow and wonder how we’ll ever make it.  That’s how I survive grief – one step at a time.

View fullsize

There was a point that my legs were so weak that I was sure I’d collapse at any moment – and I almost did a thousand times.  My brother kept tabs on me via text.  “How are you doing?”  “Call me when you get to your truck.”  “Are you okay?”  There was a brief moment I tried to take a shortcut through some tall bushes, only to meet a 500-foot cliff.  I wasted precious energy and water trying to climb up the mountain to find my way back to the trail – I made the same loop three times.  I learned that uninformed shortcuts in rugged terrain are not a good idea.  I texted my brother about my misadventure, and he became especially worried.  I assured him I was okay.

By the time the sun was setting, my phone was almost dead, and I had to turn it off to conserve what little battery I had left – should a real emergency arise.  Every step was a huge struggle.  My awkward walk to preserve my knee obliterated my leg strength.  I was literally stumbling over pebbles.  I began to think about Mitch and other boys with DMD.  There I was, looking at a simple dirt path, struggling to put one foot in front of another.  Though I don’t pretend to know their struggle first-hand, my struggle with leg weakness helped me empathize in new ways.  To a young boy with DMD, a simple staircase may as well be Mt. Everest. 

View fullsize

As I found myself finally near the bottom of the trail, I turned my phone on to check my position on the trail.  I then saw a text from my brother, “I’m on my way.”  I texted him back, “I promise I’m fine.  My legs are just really weak … I have less than a mile to go.”

At long last, with the mountain’s night breeze pressing on my skin, I looked down a dimly lit corridor of trees that led to the parking lot.  My legs were jelly and getting to the parking lot was going to be a struggle.  As I slowly exited the canopy of trees, there was a small grassy field separating the forest from the parking lot; and out of the corner of my eye, I saw my brother running at breakneck speed toward me.  I said, “Oh, Doug, you didn’t need to come back.  I was fine … my legs were just weak, that’s all.”  He insisted on carrying my pack to my truck.  Though I was exhausted, I noticed his eyes carefully studying me – looking for signs of trouble.  Even when my 40-pound backpack was relieved, I found it difficult to take a step without the help of my walking sticks.

In truth, I became emotional at the sight of my brother running toward me with a look of deep concern.  I was emotional not because I needed to be rescued – but because he cared enough to try. 

A lot happened on this hike.  I kept a sacred promise to Mitch.  I learned I can do hard things – even when I’m not prepared for them.  I was reminded that any difficult journey, including those of grief, is best traveled one step at a time.  I experienced a new level of empathy for children with muscle wasting diseases like DMD.  I learned that naive shortcuts can be dangerous.  And perhaps, most tenderly, I witnessed what brotherly loved looked like when I saw my brother running toward me at the trails end.

Though in this photo I’m standing on the summit of a mountain … in a way, I’m also standing on a different summit – one that can’t be seen with mortal eyes.  From there, I see life differently; and in the haze of the distant horizon, I see taller mountains yet to climb.  I can reach their summits, however slowly, one step at a time.

View fullsize

Without warning, an enormous clap of thunder exploded, and my boys and I jumped with fear.  A dark storm was brewing, and the afternoon sky had become almost dark as night.  The campfire we were just about to start would have to wait until the downpour passed.  From the looks of it, it seemed the storm was going to linger a while as the cool mountain wind almost ushered us into our tent for protection. 

View fullsize

Mitch squirmed into his sleeping back and wiggled around as if to snuggle deeply into the mound of soft things that surrounded him.  I chuckled a little because I did the same thing when I was a boy, and in that moment, I remembered how fun it was to be young.  I looked upon my boys with a touch of envy. Mitch pulled his hands behind his head, his face bearing a light mustache from chocolate milk, and began to smile softly.  “We’re safe and sound, right Dad?” Mitch said with a mixture of confidence and concern.  “You bet, Mitch.  This is going to be a crazy camping adventure.”  Mitch smiled and said, “I know you’ll keep us from floating away.”

Within minutes, we could hear the intermittent pitter-patter of raindrops on the tent.  A few minutes later, a burst of raindrops assaulted the side of the tent as the wind began to pick up speed.  Soon, we were in the middle of a torrential downpour.  I worried if our tent was rated for an hurricane-like storm.  Mitch nudged my arm and said, “Doesn’t this remind you of Winnie the Pooh and the Blustery Day?”  Mitch giggled as I peered nervously out the window, keeping an eye out for a flash flood. 

We knew there might be bad weather, so our backup plan was to have a den party in the tent.  So, I pulled out a portable DVD player, broke out some snacks and pulled up our covers as the boys and I watched a movie under the thinly veiled safety of our tent. 

I didn’t sleep well that night.  Aside from a few breaks in the early evening, the rain never really let up.  So, I laid in the tent in a trance-like state – somewhere between sleep and wakefulness … sitting up every hour to make sure the boys were dry.  By morning the kids were rested, and I was hammered.

Of all the moments in life, the ones I remember with great fondness and nostalgia, aren’t the times things went perfectly. Instead, the moments I treasure most are when we struggled and found our way through a hard time.  Don’t get me wrong, perfect times are just that … perfect.  I love and appreciate them for what they are; honey is honey.  But the taste of lemonade is never so sweet as when you must work to make it so.  Perhaps that’s why hard times often end up becoming our best times, in the end. 

This photo of Mitch reminds me that even in our difficulties, we can make the best of what we’ve got – and somehow, some way, we’ll look back and be glad we lived the life we lived.  In every struggle, there’s a price to be paid; but in the end, that’s what makes the sweetest lemonade.

View fullsize

My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. Most importantly, he was grateful to be with his family – for, above all else, family is what he loved the most.

“Within a few days of this photo, Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne.

A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted … ”

— Christopher M. Jones | Mitchell's Journey

My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home, he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death. 

For Mitchell, touch was important to him. No blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby, he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today, and my heart sinks to the depths of my soul that I cannot.

Within a few days of this photo, Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life, and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted … 

I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.

Over the last 2 years, I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy, he never varied. I found it fascinating that a child so young was so attuned to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about playthings and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.

I was raised to accept the fact life is tough, because it is. And at some point, the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal; a part that loves deeply and hurts honestly. 

Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating. 

Three weeks after my daughter took these photos, Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped. 

I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are just a mirage. My son taught me there are no lions or bears, only humans … and to pretend otherwise is to cheat others and ourselves.

One day, when we all have eyes to truly see, we’ll come to know there was so much more to mortality.  That to be nice to each other and grateful for life are among the prerequisites to spiritual sight.