THE OTHER SIDE OF SERVICE

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It feels like yesterday when I heard the sound of muffled thumps and giggles in our living room.  I was so intrigued by what I heard that I had to sneak behind our couch to spy on what was happening.  As I quietly crawled within view, I saw Mitch laughing as he would squeeze and twist Ethan’s ear like a squishy toy.  They were both laughing so hard that I couldn’t help but laugh, too.  Little Mitch never had a mind to hurt his brother – only to wrestle as young boys do. 

Because Ethan knew his little brother was physically weak, he adapted his play-style so Mitch might feel strong and competitive.  Ethan could have easily turned the tables and overpowered his younger brother.  Instead, he set aside his pride, bridled his strength and allowed Mitch to win in ways that were unique to him – and in so doing, they both won. 

There was a point while home on hospice Mitch said to me “Dad, I just wish I could wrestle.  I just want to wrestle...”  By this time Mitch could hardly function – so it broke my heart to see him yearn for something he loved to do but couldn’t.  I wondered if Mitch missed wrestling so much because his older brother helped him feel normal, healthy and strong.   

By surrendering his strength, Ethan did more than serve his brother this day.  He reminded me that on the other side of service is the often invisible act of lifting hearts and minds – and Ethan knew how to do just that for his little brother.   

This image reminds me there is so much more to service than lifting heavy things or shoveling a neighbor’s driveway.  There is a time and place for strong arms - but there is a greater place for gentle hands and soft hearts.  The service of a smile, a kind word or loving encouragement can do so much for the downtrodden soul.   

Sometimes, perhaps more often than we appreciate, service can be seen in handing strength over to someone who is not as strong – and giving them a chance to win.                                                                

I miss the muffled thunder of Ethan and Mitch wrestling in my home.  And while part of my home is empty and heart hurting, my soul is overflowing with gratitude because I was blessed with two little giants who showed me the other side of service.  They showed me a different kind of love – and I am better off because of it. 

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.

 

 

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.

BECAUSE IT REMINDS ME

Yesterday I found Ethan sitting on the edge of Mitchell's bed playing one of their favorite video games. Mitchell's room remains virtually untouched since the day we lost him. Even the stack of Xbox games Mitch gathered up to keep his worried mind occupied are still there, just the way he left them. I asked Ethan if he was okay and he replied, "Sometimes I like to play in here because it reminds me of him." It was a sweet moment ... not a sad moment, just tender with brotherly love. 

It occurred to me through this simple exchange with Ethan, though death may cause our loved ones to leave us, they never really leave our hearts. I wish them being in our hearts were enough to assuage the pangs of grief, but it is not. Though they live in our hearts, at least the memory of them, it is at once beautiful and terrible.

GRATITUDE, JOY & LAUGHTER

Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it.
— Christopher M. Jones | Mitchell's Journey

It was a hot, muggy and vaguely miserable summer-like afternoon. We were at a family reunion/vacation far from home. The days were long, and there was a lot of travelling and waiting in the heat. Even the shade of trees didn’t offer much comfort from the suffocating humidity. It was easy to feel miserable.

Mitch could tell Ethan was getting worn out by the heat, so he called out to his older brother, “Effie, come over here. I’ll give you a ride.” Ethan smiled with relief and ran to his little brother who wanted only to serve him. With a childlike thump, Ethan plopped his bum on the seat, and Mitch powered up his scooter. Just then, mischievous Mitch turned to his brother and began to blow on his face. “There, are you cool now?” Ethan grimaced, and they both began to laugh and laugh. Mitch never missed an opportunity to laugh or make any heavy situation seem light.

There is a layer to little Mitch I don’t often write about, and that is his sense of humor. As Mitchell’s body grew from toddler to young boy, his mind and soul began to grow in unexpected ways. On more than a thousand-and-one occasions, I was startled by his intelligence, deep insight or brilliant humor. I admired him and often said to myself, “Who are you, really?” I sensed a greatness in him that was just beneath the surface of that otherwise quiet little boy … I sensed an old soul slowly awakening and that he had a very special purpose on this earth. 

As I look at this photo, and many like them, I remember how often Mitch taught me the importance of laughing whenever you can. To this day, some of the funny things he did years ago still make me giggle – and my soul smiles. How I love that little boy. How I miss him.

At the time of this photo, Mitch was becoming noticeably weaker as compared to the rest of his friends. While they ran at top speed, he stumbled and could hardly walk the distance of a basketball court without his legs almost giving out beneath him. While they jumped, he fell to the ground. The world was closing in on little Mitch, and there was no escape from the muscle wasting that was slowly taking his life away from him. 

Life for Mitch was a lot like this hot summer day; it would have been easy to feel miserable. 

What I love about this ordinary image is how it captured his resolve for joy. Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. 

Oh, what a difference it makes to treasure what we have instead of measure what we don’t. 

Mitch taught me that when I find gratitude in what I have, joy follows. And where there is joy, there is laughter.

IMAGINE THAT

I remember the muffled whispers from these two young boys as they negotiated an imaginary scene. Little Mitch and Ethan were hard at work making a movie in their minds. Their dimpled hands moved little toy figures from one place to another over an ever-changing landscape of cloth and couch pillows. 

The child in my heart wanted to join them in the action – but I knew this was their time to bond, so I refrained and just watched these sweet boys from a distance do what they do best: imagine. “Petcheew, petcheew”, Ethan sounded with great energy. Mitch replied, “Aaaaahhhhh” as his chubby fingers escorted a little Star Wars figure from the air into a carpety ocean. Their imaginary tale continued for another 20 minutes. Quietly I sat with a smile on my face and an even bigger smile in my heart. I didn’t just see two little boys playing … I saw how much they loved each other and that filled my heart with the deepest joy.

Every single day these little boys created a storybook of adventure. Each page written moment-by-moment, sometimes with great brilliance. Furniture turned into vast mountain ranges, carpet into deep valleys. Our little home became an infinite universe of endless wonders.

Sometimes I wish I invested more energy in playing with my children when they were young. I tried, but looking back, I could have done better. I should have done better. But I suppose that is the lament of every parent. Maybe that is why grandparents are so great at what they do … because they finally learned that nothing is more important than the time we spend with family. They are less concerned with accumulating things and seem to be more interested in making moments – because by comparison, they don’t have many moments left.

Several years ago, about two years before Mitch was diagnosed with DMD, I sat at the kitchen table of a woman whom I just met. I had flown to Arizona to document some of her life story. Her name is Anita Farnsworth. A more lovely and kind person I have never met. I consider her a dear friend to this day.

She described in a most beautiful way her love of family. She has 14 children and more grand & great grandchildren than I can count. If I were to tell you the number, you might think I exaggerate. I carefully placed a microphone on her kitchen table and asked her to just talk to me. Soon I was swept away with her story as images from her words flooded my mind. 

I asked her what it meant to be a mother. She said her first delivery was very difficult … and just after her delivery someone asked if she was going to have another, she said, “I don’t know why anyone would have more than one.” With a chuckle in her voice and a glowing smile on her face, she then said with tears in her eyes, “But then, I forgot about all of that. Why cut yourself short on blessings. [With children] there is so much love.” By the end of her beautiful characterization of motherhood, my eyes were overflowing with tears, overwhelmed by the truth of her words.

Imagine that … children are at once the most rewarding and challenging assignment in life. They are the source of great pain, worry and heartache … while at the same time they bring the richest joys and deepest fulfillment. 

Sitting at that humble kitchen table was a woman who became a master teacher. I learned more about life in those few hours with her than I learned in all my years of university. About two years later, when she discovered Mitch was diagnosed with a fatal disease, she wrote me a most compassionate letter and offered her love and prayers. I was reminded of that time at her kitchen table when I felt so much love from her heart. I wept again … grateful for those who mourn with those that mourn. Grateful for those who have love in their hearts. I long for that day when the world lays down its weapons of war, its rhetoric of hate and shame and trades those cruel tools for more powerful agents of change. Love. 

Imagine that …

SHOWING UP

When our kids were younger, Laura-Ashley would hold make-shift classes on Saturday morning. Instead of playing with toys or calling friends to hang out, she would gather up old stools and turn them into ad hoc desks. Within minutes she would transform her bedroom into a classroom. My sweet daughter would spend an hour writing up some form of curriculum, drafting handouts and preparing homework assignments for her younger brothers. And when class started, she would teach the boys about math, science, english and other topics. At the time, Wyatt was a tiny toddler and had no idea what was going on; he just sat patiently in his chair because his brothers were there. 

Ethan and Mitch, being older, would always walk away with a homework assignment in hand, only to return later and have it graded. Most of the time Ethan and Wyatt attended her class - but Mitch always showed up. Always. 

This is a photo of Mitch showing up. In truth, he didn't need to be there. He had already finished his chores, completed his real homework and was entitled to play time. But because showing up was important to his sister, it was important to him. I love that about him.

When I stumbled upon this photo series recently I was reminded of the power of showing up. He never had an agenda for personal gain – he simply offered his love and support. And that is a powerful thing.

So, when I look at this photo of an ordinary Saturday morning, when Mitch decided to show up, I feel a deeper resolve to be there for my wife and kids in every way I know how. I am flawed. I struggle to do the very things of which I write – but I try. God knows that I try. I am getting a little better at it each day.

Sometimes for those who wrestle with grief or struggle in other ways, just showing up and offering love and support is all that is needed. I receive thousands of private messages from people asking for advice, so they might help their friend or family member who is struggling. They almost always worry about saying the right thing in the right way – carefully treading an invisible minefield of words and unknowable emotions. 

In my experience words of consolation, while comforting at times, do very little in the end. My advice to those who seek to comfort another is to worry less about the words you use and think more about how you cause the other person to feel. Sometimes showing up and saying, “I want you to know I care” is enough … and more. 

I remember when my neighbor, Nate Copling, came to the hospital when Mitch was in the cardiac intensive care unit, on the verge of dying. He simply showed up, just like little Mitch did for his sister, and offered love and support. That meant a lot to me. But it was what he didn’t say … what he didn’t need to say … that made all the difference. 

After this gentle, good man said goodbye to Mitch I walked him out of the CICU into a darkened hospital hallway. He turned to me with tears in his eyes and said nothing. He didn’t need to. I felt that he cared deeply. I knew that he mourned with me – which was more powerful and consoling than any arrangement of words.

Mitch and my friend Nate taught me how to show up in body, heart and soul. And when we do that, everybody grows.

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For those interested, I just posted a few extra photos of this moment on instagram.com/mitchells_journey