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.

 

LIONS AND BEARS 


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.

THE COLLATERAL OF LOSS

It had only been a few short months since Mitchell passed away.  Summer was behind us, and the air was getting colder each day.  In many ways, our grief journey was just beginning, and we’d walk many miles in deep in the shadow of death before we’d find any measure of rest.

As a father, my heart was broken and my soul weary with grief over the loss of my son.  Every single day, for over two years, my lungs felt shallow due to chronic weeping. 

I’ve come to understand sometimes I must allow my children to struggle so that they might learn and grow.  ... For all of us, the seeds in need of growth are ones not found on the surface, but deep inside the soul.
— Christopher M. Jones | Mitchell's Journey

Though my wife and I were suffering, it was never lost on us that our children were hurting, too.  As Natalie and I searched for ways to help our children process their own grief, she discovered Intermountain Health Care (IHC) just established a grief workshop for siblings surviving the loss of a family member.  In the previous winter months, I was grateful for the way in which they cared for Mitch in the hospital, and I again admired their desire to help families on the other side of medicine.  Their motto, “The child, first and always” was not only true of their practice of medicine, but their compassion for other children left behind when medicine failed.

As we arrived at an unfamiliar park to drop our youngest son off, we noticed balloons surrounding their gathering point.  “It must be them,” Natalie said with a comforting tone.  Wyatt, unsure he wanted to be there, looked out the window and didn’t say a thing.  None of us wanted to be there.  We just wanted things the way they used to be.

Wyatt stood on the perimeter of the park, unsure of strangers and what to expect.  Suddenly, one of the staff members said, “Hey catch this!”  A Frisbee was hurled toward Wyatt, who then crouched and caught the flying disc as he smiled.  Within moments, other staff members gathered around Wyatt and began playing with him.  They went from being strangers to friends in a matter of minutes.

I had a hard time keeping my emotions at bay as I saw my tender son hurting in his own way and I felt a deep measure of gratitude for these professionals who understood that there is more to medicine than biology and chemistry … that we must also care for the mind and heart, too. Wyatt began to heal that day – and my heart was grateful.

I have learned the collateral of loss goes far beyond a mother and father’s sorrow.  Children suffer in their own way and in their own time – which makes parental grief even more complicated.  We not only grieve over the loss of a fallen child, but we also grieve over the pain our surviving children experience.  I won’t detail such complications in this post – but I will say that even six months after the death of a child, the hell of such grief is only just beginning. 

Despite the collateral damage of loss – which damage, on the surface, can seem significant; there are also collateral gains – if we soften our hearts and seek to understand the meaning of things.  I believe hard things happen because God not only wants us to be strong, He wants us to become compassionate. The collateral of loss is emotional pain … but there is also spiritual gain. 

C.S. Lewis once observed, “The problem of reconciling human suffering with the existence of a God who loves, is only insoluble so long as we attach a trivial meaning to the word "love."  When I think of my own parenting experience, I’ve come to understand sometimes I must allow my children to struggle so that they might learn and grow.  That, too, is love.  For all of us, the seeds in need of growth are ones not found on the surface, but deep inside the soul.

I SEARCH FOR WORDS, YET THERE ARE NONE

 “Dad, will you open the blinds so I can look out the window?” Mitch said softly as he sat up on his bed.   

Reverently, I lifted the blinds so Mitch could look out the window unobstructed.  I was quiet about it, too, for this was a sacred time when death was near, and the veil was thin.  It was a cold, wintery day and snow covered everything.  The light of late afternoon had become soft and warm as if to compensate for winter’s chill. 

The end was coming; man and medicine were powerless to stop it.

Mitch looked out the window in silence.  At that moment, his countenance changed from that of a young boy to one of an old soul emerging.  I asked him what he was thinking, and he shook his head as if to say, “Not now, Dad.”  Mitch then said, “I’ll tell you later.” 

He knew he was going to die, but he didn’t know he only had a few days left.  None of us did.

I watched my son in silence – respecting his need for space.  I searched for words, but there was none.  I wanted to hold him tight, help him feel safe, and tell him all would be okay.  But things weren’t safe, and he wasn’t going to be okay.  The end was coming; man and medicine were powerless to stop it.

I said a prayer in my heart, “Oh, Father, please … I’ll pay any price.  Can I take his place?”  I guess that was my way of bargaining – and I did it a million times a day.  With all my prayers, I knew that none of us could escape death – nor can we escape hardship.  I understood that it rains on the just and the unjust and we must learn to bear our burdens patiently.  I understood the wisdom of an old Jewish proverb, “Don’t pray for lighter burdens, pray for a stronger back.”  Although I always prayed for a way out - I also said, “But if not, please help us carry this burden.”

Little Mitch never told me what he was thinking that day.

This sweet boy lived out his remaining days as gently as he came into the world.  As death was gnawing and gashing at our door, Mitch surrendered his soul to God with the faith of a child and the heart of an angel.  He was a giant among men, and I was then, and remain today, deep in his shadow; for I am less than a shadow of a man.

In my darkest moments, I searched for words and found none; until I learned to quiet my mind and heart so I could see all that God had done.   It was then and only then I found gratitude in the midst of grief

One day, when I go to that place beyond the hills, I will thank my Father for loaning Mitch to me.  My son, my brother, my teacher – a gift burdened by adversity who taught me how to see. 

WHAT CHILDREN REMEMBER*

I'll never forget how startled I was when Mitch walked up to me and handed me this piece of paper whispering, "Hey Dad, I made this for you and Mom."  I smiled and said, "Awww, Mitch, I love it when you draw pictures.  Can you tell me about it?"  Mitch paused a moment and said, "Remember that night we went camping and we almost froze solid?"  I giggled, "Oh, boy do I remember that night."  Mitch then giggled and began to describe what he remembered from that camping trip. He said, “You kept waking up to check on me.” 

That was the most difficult night we’d ever had camping.  I remember calling Natalie on my way home from a meeting one wintery Friday night.  I asked her to throw our camping gear in the back of the truck and told her that me and the boys were going on an adventure.  The boys were excited and before we knew it, we were headed up a snowy canyon near Tibble Creek reservoir.  

By the time we reached our campsite the sun was all but gone and we were setting up in the dark.  My sweet wife inadvertently packed a summer tent with no wind guard - which was basically a mosquito net.  I asked the boys what they wanted to do and they said, "Let's not quit.  Let's do this."

After a few rounds of hot chocolate around a roaring campfire, we settled in for the night.  My boys were cuddled up in sleeping bags, blankets and beanies.  The canyon filled with giggles as little Mitch and Ethan shared jokes.  Then the giggles softened and the jokes became fainter. Before I knew it, the boys had drifted into a deep slumber.  I wasn’t so lucky.

I don’t think I really slept that night. Instead, I was in a constant state of worry.  On occasion, I drifted into a shallow sleep, only to jolt out of my sleeping bag to make sure my boys were still covered and warm.  Then I’d lay on my back and look through our unprotected half-tent at tree branches made bare from the winter snow.  I gazed beyond the forest trees at a million stars that shimmered like crystals of ice. I thought, “I’m pretty outer space isn’t this cold.” I wondered if the night would ever end. 

After what seemed a never-ending cycle of waking, panicking, checking, then dozing … the stars became faint and the blackness that surrounded them turned deep blue, then gradually light blue.  Before I knew it, morning had come and the stars were gone. 

We started another roaring fire to get warm and it didn’t take long before we were on our way down the canyon.  Mitch was quieter than usual that morning.  Mitch just looked out the window as if in deep thought.  Finally, I asked, “Hey Mitch, what’s on your mind?”  He said, “Dad, let’s never do that again.”  I chuckled and said, “Good idea.  I’m in.”  He smiled and we both laughed.

How often is [our children’s] mind and heart simply shown by their hand-drawn art?
— Christopher M. Jones | Mitchell's Journey

Later that night, I sat by Mitchell’s bed as he whispered a nightly prayer.  Until that point, I don’t think I’d ever heard a more genuine expression of gratitude for a bed, warm blankets and that we “didn’t have to sleep in a tent for reals.”


That camping adventure remains our most difficult one on record – which is why it surprised me little Mitch took the time to draw it.  When I asked him why, Mitch thought a moment and said, “I don’t know.  I guess it wasn’t THAT bad.  Plus, it made me grateful for what I have.” 

Mitch wasn’t the only one to draw pictures of that hard adventure.  My other boys did something similar.  In their minds, they saw the difficult experience for what it was – just momentary discomfort. What they remembered, in the end, was the good they pulled out of that experience.

In matters of parenting, I wonder sometimes who is raising who. My kids teach me in the most simple and profound ways. Yes, they may acknowledge a difficult experience, but it seems they chose to remember the better parts. How often is their mind and heart simply shown by their hand-drawn art?  And if it be our children see the good so easily, therein lies a lesson and a challenge for me.

 


Some Photos of Our Camping Adventure Mitch Crecreated

 
 

HARD THINGS

Little Mitch was so nervous on his first day of school.  I had just given him a fatherly hug, told him how proud I was of the young boy he’d become and that I believed in him.  I told him that of all the people I have ever known, I knew he [above all other people] could do hard things. 

I believe, in matters of the Spirit, we experience similar help from those on the other side – however much we may feel alone at times.
— Christopher M. Jones | Mitchell's Journey

With that, I whispered, “I love you, son.” Mitch sniffled and said softly, “I love you too, Dad.” As I turned to walk out of the classroom, Mitch said, “But … Dad?” I responded, “Yes, son.” “Will you be here to pick me up from school? I don’t want to fall. I’m afraid.” “Yes, sweet boy, both Mom and I will be back to get you. We will never leave you alone.”

Mitch swallowed the tender lump in his throat, held back his tears and tried to muster whatever courage his little heart could find. Natalie lingered in the classroom so she could make sure his new teacher and aids understood our son’s special needs. Though Mitch felt alone at times, he had a small battalion of people helping him. I believe, in matters of the Spirit, we experience similar help from those on the other side – however much we may feel alone at times.

There was a part of me wanted to take my son’s hardships away – to shield him from difficulty, pain, and sorrow. The other part of me knew that through struggle comes strength – both in matters of the body and the soul. Instead, I just prayed to my own Father that my son would be blessed with strength beyond his own.

As I waited in the hall and watched Mitch dig deep to find courage, I began to choke on the lump in my throat. Mitch wasn’t worried about making new friends, nor was he afraid of school work. He was nervous about being knocked over and that nobody would be around to help him up. Little Mitch was worried teachers would understand that he’d be asked to run and jump like regular kids – that he wouldn’t have the muscle strength to do what he was asked and that somehow, he’d get in trouble for it. This little boy wasn’t just worried about keeping up; he was worried about being left behind, getting knocked over in the hall and being trampled on by a swift river of students going from one place to the next. Such was the mind of my little child … innocent and pure.

True to our word, Natalie and I returned to pick Mitch up from school. Mitch carried a look of relief and determination on his countenance. As his Dad, I was so proud of him. He wasn’t perfect – nor did I expect him to be. He tried, and he grew because of it … and that made my heart glad.

I was then, and remain today, an imperfect dad.  Having kids was hard, losing one was harder and learning to live without him is hardest.  Sometimes I feel like Mitch in this photo – unsure and afraid.  But then I remember my Father sits just out of view, looking in, knowing that through struggle comes strength.

Being mortal, it’s easy to forget the things that hurt and sometimes break us are the same things our Father uses to refine and shape us. And when, like Mitch, we think we’re on our own – if we look up and around – we may sense help from beyond … and strength beyond our own.

This I know. I know it in my bones.