WHY WE SUFFER

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As Mitch began to drift away, I would look at him with deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to someplace safe. A place like the children’s books we often read to him – a place of hope and happiness, joy and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day, and I was greatly pained therewith. When I took this photo I had the distinct impression we were no longer counting the days, but the hours.

I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, “I am so sorry this is happening, son. You are so brave. I think sometimes God sends us the little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you.” Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.

While Mitch slept, I wept.

I wept so hard the bed was shaking, and I worried I would wake him. The grief I knew then was but a foretaste of the grief to come. It turns out death was the easy part … for I'd soon experience a kind of bewilderment, emptiness and longing that would become a more painful hell.

I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead, I learned to turn my ear heavenward; to listen for secrets to the soul and learn what I was meant to learn. Too often people get hung up on asking the wrong questions – and therefore get no answers. They ask “why would God do this?” When we hurt, it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we’re being singled out or treated unfairly. But the last time I checked, life isn't fair, and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of afflictions. In the few minutes it might take to shake our fist and complain about our own lives, hundreds of people will have passed from this life to the next, and a great many more will mourn their absence. The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.

At least for me, I've come to discover suffering and sorrow are an important part of life’s learnings. Any more I worry less about the origins of my sorrows – for what difference would it make? Surely God isn’t caught off guard or surprised by the events in our lives. Whether He’s the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion … He could change the course of our sorrows if He wanted to. The fact He often doesn't sends a compelling message. The question I ask myself is, “Am I listening?”

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.
— Christopher M. Jones | Mitchell's Journey

So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description that left my soul weary, bruised and weak. I didn't want my little boy to go, for he was my tender son and I loved him so. Though I prayed mightily for his safe return, the answer I received was “No, my son, for there are things you must learn.”

Thus began my journey with grief, down a bewildering path in search of relief. And though I still hear the deafening sound of death’s terrible toll, I have come to understand our mortal bodies are but clothing to the soul.

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.

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ONE STEP AT A TIME, A MOUNTAIN TO CLIMB*

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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. 

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.”

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.

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. 

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

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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.”

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.

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. 

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.

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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.

 

 

THE SWEETEST LEMONADE

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. 

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. 

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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.

 

WHEN TIME RUNS OUT

I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.

On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.

Neither of us knew he had 48 hours left.

Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.

I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.

Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission. 

Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down. 

Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out. 

You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.

At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.

 

ON GRATITUDE

Gratitude not only strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.
— Christopher M. Jones | Mitchell's Journey

We had just parked in front of my in-laws for a Thanksgiving dinner. My not-so-little Mitch, always asserting his independence, began to walk awkwardly down the slight slope of their front yard to the front door. Walking can seem like such an easy thing to those of us who have muscle strength. But to Mitch, walking was difficult ... as evidenced by his awkward gait and increasingly visible struggle to lift his legs high enough to put one foot in front of another. Despite his independence, he would need help up the stairs. 

Mitch was so interesting; whenever life seemed to take things away from him, his gratitude for what remained only grew stronger.

He shared his gratitude for life on many occasions and in many different ways. Each time he expressed his gratitude for life, his words were simple and profound. One day I will post the audio from a one-on-one interview with Mitch where he said "I'm grateful for life." 

I think he sensed early in his life that he would only be here a short time. He knew it, in a way, just like I knew it; except I think he knew it without knowing it.

I wonder if one of the reasons he valued life so much was precisely because Mitch sensed something was seriously wrong. nWhatever the reason, because this young boy was so grateful for life, he lived and loved deeply - never taking a minute or moment for granted.

He gathered gratitude like a wise traveler might store up oil for their lamps ... in preparation for those long, dark times when the only light we might ever see see will come from the light within.

Gratitude not strengthens the heart and soul, it also serves as a light to shine ... not on what was lost, but what remains.

 

IN TIME

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me.
— Christopher M. Jones | Mitchell's Journey

I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.

MAKING PEACE WITH PAIN

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.
— Christopher M. Jones | Mitchell's Journey

I don’t have many photos of Mitch with me – which makes the precious few I have all the more special. Most of them aren’t in focus – but I don’t care. I’ll take anything I can get. 

Whenever he was close to me, Mitch would lean his head into my arm, shoulder or chest as if to cuddle any way he could. I know he felt comfort around me – but I don’t think my son had any idea the comfort I found in him. I still long for that comfort.

By the time this photo was taken, we were informed Mitch had days to live. I was so sad about losing my son that I cried everywhere but in front of him. My eyes always seemed to sting, as if I were swimming in chlorine. Every waking moment, my chest felt like it was covered in a lead blanket, my lungs felt shallow and breathing seemed vaguely sharp and painful – for the hours-upon-hours of weeping took its toll on my weary body. Sleeping was impossible. And when I finally found sleep, I wasn't sleeping; I was just passing out. 

I remember teaching little Mitch how to walk as a toddler. It was hard for him because his legs were already weak – but he would hold my fingers with his baby hands and he gave it all he had. I remember listening to his tender voice as he read children’s books to his sweet mother. He tried so hard to be a good student. With vivid detail, I remember watching his chubby little hands grip crayons and work so carefully to color within the lines. As he grew a little older, we tried to teach him that one’s beliefs don’t make them a good person, but their behavior does. Mitch embraced that philosophy. Before he died, we asked him what advice he would give the world. He said this exact phrase, “Be nice to each other and be glad you’re alive. Nothing else matters.” In a tender moment, this small child became a giant; the student became the teacher. I will spend the rest of my life trying to live up to those tender words from a little boy who did just that.

We spent almost 11 years trying to teach our son how to live. Suddenly, we had to teach our son how to die. Nobody ever taught us how to do that and we were terrified beyond measure. As this little boy came to know his fate, the real giant emerged. Though small in stature, he was towering in spirit. 

I have seen a lot of material over the last few years about grief, death, and healing. Some say death is nothing at all – as if to suggest we needn’t trouble ourselves with sorrow over the death of a loved one. Others say our child is just around the corner, as though we might suddenly find peace in such a notion. 

The loss of a child isn’t nothing. To the contrary, it is everything. What’s more, around what corner can I walk? What room can I enter to see my child and hold his hand once more? There is no such room, no such visiting hours. Though I have had spiritual experiences that show me my son still lives and that there is life after life, I still miss my son. I miss the way I used to have him. I miss his voice and his tender ways. I miss the ordinary days. 

Though I understand what those writers were trying to say, I believe some of that prose can cause the sufferer, especially those new to grief and even those who have suffered long with grief, to wonder if something is wrong with them; that because they still hurt, perhaps they’re not grieving right. 

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.

Grief is a long, long road. As far as I can tell, I will live with grief the remainder of my days. Through that sorrow, I am learning Heaven’s strange and mysterious ways. And with each tender lesson from my Father, I am beginning to make peace with my pain. I accept that somewhere deep inside me, there will always be a little rain. That is making peace with pain.