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No sooner had a thunderstorm passed than little Mitch wanted to go outside and play.  “Hey, Effie, I think it flooded out there.  Let’s check out the puddles,” Mitch would say with an excitedly mischievous tone.  Ethan was glad to join adventures of any kind so he nodded with a flip of his chin and they headed outside.  It didn’t take long before our boys were soaked from head to toe and it didn’t bother us one bit – for memories in the moment were more important than clothes or material things.   

“On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% … and that’s pretty good.”

— Unknown

I loved watching my boys play this warm summer day. As I felt many times before, the little boy in my heart wanted to play with them, too.  But I remembered this was their time, so I just watched them from a distance and smiled, glad to take photos along the way. 

This was an especially tender time for our young family.  Doctors told us our son would die and warned that our family would almost certainly end in divorce.  To compound matters, we were told the journey between now and then would be met with emotional suffering and inconvenience.  It was hard to feel brave when the future seemed so brittle. 

Though I could scoop little Mitch up in my arms that day, I had a distinct impression he was my baby made of sand and that it wouldn’t be long before he’d start to slip away, however tightly I tried to hold and protect him.  I worried about the storms that lie ahead and wondered if my little family would survive them – despite what we’d been told.  So, I tried to drink in this moment in hopes it would nourish my soul for the emotional famine that lay ahead. 

A few months ago, I was invited to speak at a hospital in North Carolina about Mitchell’s Journey.  At the end of my address there was time for some questions and answers.  In the back of the auditorium was a woman who had been following Mitchell’s Journey for some time and spent the better part of her career helping people through death, surviving and healing.  In a most respectful way, she mentioned what the sharing of our son’s journey has meant to her personally, but then she asked what it was all about.  She said, “What is it you’re trying to do?”

I responded that Mitchell’s Journey is about the examined life and learning to live a life of significance.  That is what this sharing is all about.  Everything else is secondary. Yes, people will learn about the disease that took my son’s life; and yes, we aim to help others who carry the burdens of DMD … but the message of Mitchell’s Journey transcends any specific disease.  As I’ve observed in earlier posts, Mitchell’s Journey isn’t about a medical condition, it is about the human condition.  It’s about making sense of suffering, finding hope when there appears to be none, and making moments matter.  It’s about learning how to live, even in the darkening shadow of death, doubt or discouragement.

I’m just a regular dad with more weaknesses than strengths; but I sure love my family and I’m learning to live a richer, more significant life, because of little Mitch.   

As I look at this photo and remember a fragile time when the future was frightening, I am reminded of the quote, “On particularly rough days when I’m sure I can’t possibly endure, I like to remind myself that my track record for getting through bad days so far is 100% … and that’s pretty good.”

Among other things, Mitch has taught me that storms pass and the sun comes out again.  Like my little son that warm summer afternoon, I am going outside to check out the puddles and explore the beauty left behind.

Though I miss my little boy, I am grateful I took the time to enjoy the moments I had, while I had them.  Because those moments back then bring peace to my soul and a smile to my face today.

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Young Mitch sat quietly in the shade of a tree that was probably 100 years old, or more. Spring had arrived and the air carried a hint of warmer days to come. With each passing day, the warm southern breeze chased the snow up the mountain, soon to disappear. Mitch loved all seasons. He loved the warm, the cold, and everything in between. To him, his cup was always overflowing and his gratitude for even the smallest things spilled over me and caused me to be grateful, too. He was my little boy, yet he was my teacher … and I thank heaven for that.

“I see it now. I see what those almost spiritual impressions were trying to tell me.”

— Christopher M. Jones | Mitchell's Journey

So on this spring morning, Mitch sat in the shade of an almost ancient tree away from others, glad to be alive.

Like me, Mitch was content to be alone. He was shy by nature, but that wasn’t why he enjoyed solitude. Instead, he liked aloneness because he was a thinker – and when his environment was quiet, he could think more clearly. As he grew from tiny boy to a young man, he always surprised me by his insights. I have long admired the quote, a derivative from author Walter Scott, “Oh, what a tangled web do parents weave when they think their children are naive.” Before my wife and I had children, I always sensed the truth of this saying – but when we had Mitch, I discovered how true it was. Often, his perceptive nature was camouflaged by his quiet ways.

Watching my boy in the shade was surreal; his t-shirt bearing the emblem of a favorite video game reminded me of his youth, but I also sensed there was a much older soul that dwelled within his body, hiding in plain sight. There were two Mitchell’s before me … the child I could see and the old soul that was slowly revealing himself.

I didn’t know that he only had a few years left. I just sensed time was precious and that I should make moments matter. I had a growing, urgent feeling to gather memories … as if to store them up and prepare for harder times to come. I see it now. I see what those almost spiritual impressions were trying to tell me.

I am glad I listened to those feelings in those younger years. For in times of grief, these tender moments with my son bring my weary heart a measure of peace … and for that I am grateful.

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A few years ago I took my kids camping high in the Wasatch Mountains on what turned out to be one of the coldest days that winter. The decision to go winter camping was last-minute, so I called my wife and asked her to throw our tent in my truck so we could leave the minute I got home from work. With that, my dear wife quickly gathered sleeping bags, extra blankets, dry clothes and made my famous tinfoil dinner. You can find that recipe below.

“I think little Mitch was on to something; that perhaps sometimes the hard times turn out to be our happiest times. Certainly not in the moment … and maybe not all the time. But sometimes.”

— Christopher M. Jones | Mitchell's Journey

We raced into the mountains so we could find a camping spot before night came -but before we arrived at our destination, it was already dark and the temperature was falling rapidly. I carried Mitch on my back a few hundred yards because his legs were much too weak to walk through the snow. Within about 15 minutes we had started a roaring campfire so the kids could get warm while I set our tent. Within minutes I discovered Natalie accidentally packed what was essentially a mosquito net for summer picnics. It offered virtually no protection from the bitter cold. I told my boys it isn’t a good idea to quit at the first sign of a struggle … that we can always find a way if we look for a solution. After some discussion, my boys decided they wanted to stay anyway.

That was the longest and most difficult camping trip of my life. I didn’t sleep more than 15 minutes at a time. No sooner would I doze off that I would awake in a panic, spring from my sleeping bag and make sure my boys were covered and warm. I would then lay my head on the frozen floor and peer into the starry sky through the mosquito net thinking to myself, “What on earth are we doing?”

The next morning we awoke and started another roaring fire. A warm cup of hot chocolate was on the way when Mitch came to me and said, “Hey Dad, let’s not ever do that again.”

“Deal,” I said with a chuckle and then kissed his face, “I am sorry you were so cold.” Mitch smiled and said, “It’s okay Dad. It was fun … but not that fun.” We drove down the mountainside and I took our kids to the first restaurant we saw and I ordered them each a stack of hot pancakes and scrambled eggs. As I saw my boys dig in and chuckle between themselves over the mosquito net, my heart was overflowing. I thought myself the luckiest man on earth. I was so glad to be a dad.

There have been times, in moments of parental doubt, I wondered if dragging my boys out in the cold, away from our warm home was a good idea when they were so young. But then I would find little folded pieces of paper on my nightstand addressed to me from Mitch. In each piece of childhood origami was a hand drawn picture of adventures past. Not once did he draw pictures of Disney Land or expensive vacations, instead he re-created fire pits and fellowship. He seemed to interpret struggle with a measure of fondness. He would draw pictures of our spring camping adventure when we nearly got flooded out by a torrential downpour. He made drawings of the winter camping trips we vowed to never do again. From the boiling hot deserts to the dirty, muddy hills … the things we disliked in the moment, turned out to be the things he remembered and loved the most.

In like manner, when I think of our early days raising a family … when exhaustion and discouragement nearly broke us … those are some of our sweetest memories. I think little Mitch was on to something; that perhaps sometimes the hard times turn out to be our happiest times. Certainly not in the moment … and maybe not all the time. But sometimes.

Mitchell's Favorite Recipe

Apply portions according to preference.

• Lay down foil sheets to match the number of meals you want to make.  I recommend using two sheets per meal to ensure a strong seal.

• Optional: apply a light coat of non-stick spray to one side of the foil

• Lay a bed of tater tots on each sheet.  Two handfuls is usually sufficient.

• Pour cream of mushroom on top of the tater tots.  Be generous with these portions as they soak into the tater tots and become like gravy.  One can per meal is usually perfect.

• Cut chicken breasts to desired size and place on top

• Add corn

• Season with salt & pepper and other spices to preference

• Wrap & freeze

 

Freezing foil dinners will ensure your meals stay fresh.  When you’re ready to cook it, you simply place it over hot coals and rotate every 5 minutes for about 20 minutes, or until your meal is thoroughly cooked.

There are alternative ingredients to virtually every item on this recipe, but Mitch (and our family) have found this one especially perfect.

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Tip on Cooking Over Fire

Be sure to cook over hot coals, not a roaring bonfire.  

The best time to place your foil dinners is after the flames have died down and the bed of your fire pit is filled with red hot coals.

You can also cook your foil dinners on a grill, as seen below.  We made these meals for Cousins Camp 2016:

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unlike flames from a fire, hot coals create intense,  even heat

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Sometimes it takes patience to wait for the fire to die down and coals to appear 

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its a good idea to spread coals out evenly so heat is distributed ACROSS your cooking area

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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.