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There is a saying that reads, “Do not teach your child to be rich. Teach him to be happy. So when he grows up, he’ll know the value of things, not the price.” I always loved this saying for many reasons and have tried to help my children appreciate the little things: soft pillows, macaroni and cheese, and blanket forts. After all, true value has little (if anything) to do with price –and the things of greatest value cannot be purchased with money. Not at any price.

“Once I discovered this, the relationship between the highway and this canyon began to serve as something of a metaphor to me – a reminder that sometimes I can’t see a thing until I step back and look from a different vantage point. ”

— Christopher M. Jones | Mitchell's Journey

During his last summer of life, Mitch spent some long-awaited time at his grandmother’s ranch in Southern Utah. On this day life couldn't have been more awesome; the weather was perfect and glee was floating in the air like spring pollen. On the horizon, you could see the ancient fingers of Kolob Canyon which stood towering into the sky as a majestic reminder that our lives are but a blink and humans are only transients on this planet … this classroom of rock and water.

Before my mother moved to her ranch I drove by this canyon a thousand times, oblivious to the true beauty of the landscape I was passing. The highway hugs the mountain range and base of Kolob Canyon in such a way you cannot see it (not even a little bit) because the road is too close to it. Without the proper perspective, everything feels ordinary. But, if you take an exit near the canyon and get a little distance from the highway, you will see the most amazing mountain range. This canyon is one of Utah’s best-kept secrets – invisible to the casual traveler.

Once I discovered this, the relationship between the highway and this canyon began to serve as something of a metaphor to me – a reminder that sometimes I can’t see a thing until I step back and look from a different vantage point.

My experience with Mitch taught me the same thing. As I travel the long road of grief, when I step away from my sorrow and look upon the landscape of this experience from a different vantage point, I see beauty. I also see reminders this place is not home … that I, too, am a transient and will one day travel to a better place.

I love this photo because it reminds me Mitch lived a good life. If there were one image that best illustrated my son, this is it. Mitch was happy – not because of things, but because he was loved by his family and he discovered ways to find joy in everything. I have recently discovered many videos of my family where you can see Mitch skipping in the background (unaware he was on camera) because he was simply happy. Although the road he traveled was hard, and he could have found a million-and-one reasons to complain about life not being fair to him, he always stepped away from his limitations and appreciated life from a different vantage point. He saw the canyon.

While having lost my son has been a source of great sorrow, he is also a great source of inspiration to me. And though I walk imperfectly, I will learn from my little boy. Like Mitch, I will find a reason for glee. For indeed, as I step away and look upon my life differently, I can clearly see there is beauty all around me.

Thank you, Mitchie, for teaching me to be happy – to always find a reason for glee.

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I wonder what would happen if everyone had a chance to read the warning label before we made life decisions.

 The day of my wedding my warning label might have read: “Congratulations. You are young and in love. Enjoy the calm before the storm, for the years ahead won’t always be kind to you. In fact, they will be brutal. Yes, you’ll experience triumphs, but you’ll also come to know the darkest tragedies. Though you won’t mean to, you will make choices that hurt each other and yourselves. You will fail at a business before you succeed and while you've failed you’ll find yourselves searching the couch to find enough quarters to pay for diapers. You will struggle, and you will be afraid. At some point, you’ll wonder if you're capable of anything at all. You will come to know the darkest storm clouds and your wilderness will be vast and deep. Your heartstrings will be wrenched and pulled until you can no longer stand. You will have a child that will die, and you will fall to your knees and weep until your knees are broken and worn. Pain and struggle will be your teacher. And that’s just the beginning.”

Yet, next to the warning, I would have also read a benefits label: “Take heart. Though you may feel alone, you will not be, not ever. Your Father will be with you – for He is your tutor and all that will happen will be for your good. You will have a family and come to know a love you scarcely comprehend on your own. That love you will come to feel for your children will be but a speck compared to the love your Father has for you. At one point you’ll finally understand that to know the love of family is to know a little more about God, for we are all His children. Your tears of joy and sorrow will become a lens to your eyes and you will begin to see things you didn't before. Your heart will grow and feel more love and joy than you can imagine. Like a heavenly constellation, you will begin to see the tender mercies poured out upon your lives by a loving Father - however, you will only see those stars in the pitch of night. You will make connections between them and eventually see the hand of God through everything. And that’s just the beginning.”

Today marks our 21st anniversary. On that cool September day, I married my wife, I had no idea the journey that lay before our feet. I’ll never forget crying as the officiator spoke, not out of sorrow but out of a deep sense something was being put in motion – more than I knew. All I knew was I loved my wife and it was good. I knew I would be imperfect, but I would do my best. My love for this good woman has only grown stronger and deeper. I consider myself blessed beyond measure.

 Today, as I look back upon the 21 years we've had together, knowing the depths of horror and the heights of happiness – I wouldn't trade my life for anything. Between the hurt and the happiness, I have come to know a different kind of love – and for that love I am grateful. I would do it all over again. To infinity and beyond, I would do it all over again.

 And to think that today I can no more read the warning and benefits labels for tomorrow.

 Today is just the beginning.

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About two months ago I was sitting near the front of a large auditorium before the annual PPMD conference was about to begin.  I was scheduled to give a keynote toward the end of the conference, and my mind was occupied, a little frantic even, trying to figure out how to best convey a message of hope and gratitude.

“Though my heart remains broken, I can yet bask in the warm glow of good memories.  And in that warmth, I am grateful for all that I had – for that is enough, and more.”

— Christopher M. Jones | Mitchell's Journey

My heart is never so tender as when I’m about to speak to an audience about little Mitch.  I missed my boy and wished he was still with me; yet in sharing him, whether, from pen or pulpit, I get to re-live some of the sweet and all-too-brief moments, I had with him. As a broken-hearted father, keeping my memories close helps him not feel so far away.

So, there I sat … busy worrying - worrying about what I was going to say and how I was going to say it.  I felt strangely unprepared and unqualified.  In the corner of my eye, I noticed a young man walking toward me. His body and posture carried the same signature my son Mitchell had when he was with me.  This young man (16) was from India – but living in California for a few years so he could participate in a clinical trial.  His soft, kind smile reminded me of Mitch. 

He gently handed me a small yellow bag and said he and his mother wanted me to place a gift by Mitchell.  

The lump that was already in my throat because I was thinking about my son began to grow larger.    

Inside the bag was a little figurine of a small child sleeping next to a puppy – symbolic of Mitch and the comfort he received from his little Marlie.  Also, in the bag was a handwritten letter that began with the words, “Dear beautiful, tender, and sweet Mitchell …”  When I read those words, my eyes instantly filled with tears – so much so, I nearly wept.  The letter to Mitch was thoughtful and kind and referred to something Mitchell said when spoke of forgiving an adult who was unkind to him.  Mitch said, “When you see with your heart, you see everything that matters.”

Recently this young man, Abhinav, reached out to me on Facebook and we became friends.  I’m grateful to know another young man like my son – whose heart is kind and thoughtful.  Someone who reminds me what it means to be good.

The thoughtful note and gift so touched me, and I was anxious to honor the request of this sweet family.  So, when I returned home, I went to the cemetery and reverently placed this at the foot of Mitchell’s headstone. 

I have discovered a certain peace and symbolism in this gift – a reminder that my son sleeps in peace.  It also reminds me of the sweet and tender times I had with my little boy. Though my heart remains broken, I can yet bask in the warm glow of good memories.  And in that warmth, I am grateful for all that I had – for that is enough, and more.

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. 

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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.”

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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.

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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. 

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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.”

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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.

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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. 

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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.