WHEN THINGS ARE RARE

I took Wyatt to sports clips today. When we were asked to check in at the kiosk, I saw Mitchell‘s name on the register.  This was the same place Mitch used to get his haircut on occasion.  He always loved to get the deluxe package where stylists washed his hair and massaged his scalp. 

... time is common to all of us –being in the moment is rare
— Christopher M. Jones | Mitchell's Journey

During one of our visits Mitch said softly, “Dad, I really like it when they run their fingernails through my hair. Sometimes I almost go to sleep.”  I chuckled and kissed him on the forehead and said, “Me too!  Wouldn’t it be nice if someone could do that to us every day?”  Mitchell nodded as his eyes turned down as if to think about what I said. After a few moments of thought, he responded, “Yeah, but then it wouldn’t feel so good anymore because I’d get used to it. I like it better when things are rare.”

That sweet exchange and many other memories I had filed in the back of my mind began to wash over me the moment I saw my son’s name on the kiosk.  It was an unexpected, painful reminder that my sweet son is no longer with us.

I’ve been happy lately – but I admit, my heart deflated at this moment.  And when Wyatt tugged my arm and said, pointing to the kiosk, “Hey dad, look, it’s Mitchell’s name.”  I felt a second wave of hollowness in my heart – an echo in the caverns of my soul.  Suddenly, I felt a deep longing to have that sweet little boy back in my life.

I can see how reading this blog can be misleading to some who might think I sulk about with my head hung low, constantly picking at my wounds.  What they don’t see is 90% of my life is occupied with my wife and children, work and other dreams I’m pursuing.  When I sit down to write stories of Mitch, I’m opening the door to the public to my personal therapy sessions – except I’m both the patient and the therapist.    Writing is how I grieve and how I heal.  It works for me.  When I write, I’m creating a grief moment – and those are healthy for those who will hurt for the rest of their lives.  What made this encounter with my son’s name so difficult today was its suddenness.  There as no warning … no way to prepare.  It was a trigger, and because of it, I wept.  They were refreshing tears.  Healing tears.

While this tender breadcrumb pointing to my son’s absence may have pained my heart, I was grateful for the reminder of my son’s philosophy on things that were rare.  Mitchell’s heart was a treasure chest in which he kept the sweetest things.  I suppose this journal is a record of the things he kept close to his heart and a missive on the things he’s teaching mine.

Mitch had a maturity of mind and soul that was itself rare.  He was careful never to let things he loved be over-used or taken for granted and he always delayed gratification so that the reward was both rare and deeply appreciated.  One year, Natalie challenged our children to not eat any candy for a year, and she’d pay them $100.  Mitch was the only one who met the challenge.  I even offered to make Halloween exempt from that challenge, but he chose to be true to his original promise.  On January 1st the following year, Mitch earned a crisp $100 bill.  To little Mitch, it wasn’t the money that mattered as much as the accomplishment.

Even more than material things, Mitch treasured moments like none I have known before.  I have yet so much to learn from my son.  Today I was reminded to treasure things are rare.  Specifically, while time is common to all of us –being in the moment is rare.   By looking backward and examining my life, I can’t help but appreciate the moments that are yet ahead of me.  Because of Mitch, I’m going to take extra care to treasure moments – for they are special.  They are rare.

SOMETIMES*

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.


Tip on Cooking Over Fire

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

iStock-474944786 (1).jpg

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:

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

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

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

FILLED TO INFINITY

Winter was pressing gently on us and the skiffs of snow and crisp air seemed to promise colder, snowier days ahead. With the holidays approaching, Mitch was excited about the season of dad’s famous hot chocolate, sleigh riding, popcorn and movies by the fireplace, Christmas presents and lots of cuddles. The little boy in me was excited, too.

When I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.
— Christopher M. Jones | Mitchell's Journey


I left a busy day of work so I could meet little Mitch at the University of Utah Hospital where he was to meet with Dr. Flanigan, a specialist who is leading some research with neuromuscular disease and DMD. 

Just 20 minutes prior to taking this photo I was in the hall of the hospital peeking at Mitch through the door of an examination room that was open a crack. I was pretending to sneak around while a nurse was doing some benchmark tests. Mitch kept trying to hold in his giggles as if we were both going to get busted. I remember when I was a young child trying to prevent a giggle at church or in school … it was always the moments you weren’t supposed to laugh that seemed to make giggling the most intense. Mitch was having one of those moments where he was about to lose himself in laughter. The nurse played along and pretended to be stiff and orderly – but in her heart, she was giggling with us. I was so grateful for medical staff who care for the heart and soul as much as they do the body.

At the end of the doctor’s visit, I kissed my wife and kids and said goodbye. As I started to walk to my own car, Mitch turned around and smiled as I said “I wuv you Mitchie!” My heart was overflowing then and it overflows today when I look at this photo and see his smiling face. 

I don’t remember the substance of the business meetings I had that day, but I can tell you the meaning of these moments and what happened with my son. I remember what happened because that’s what matters most to me and I chose to be in the moment. If I wasn’t careful, I could have shown up at the hospital but never really arrived. I know how easy it is to be distracted and disconnected from what is in front of us. From the digital devices that entice us away to preoccupations of work or hobby … or perhaps simply stress; it is easy to be somewhere but nowhere. 

I have discovered the true present of being present. Not only did being fully engaged with my son mean a lot to him then, reflecting back on this moment now is a gift of comfort to my weary heart. It is a reminder to me, when I’m tempted to doubt myself, that perhaps once in a while I got something right. It motivates me to keep getting things right. I miss the mark more often than I want to … but I keep trying.

Just the other day I was visiting with my mother about life. I asked her, “What is the one thing in life that has most surprised you?” She said, “The brevity of it.” I immediately felt the truth of her words. Life is brief … and moments are briefer, still. How easy it is to be swept away in the thick of thin things and be robbed of life’s greatest gifts. This photo is a symbol of the present of being present. 

So, when I think back on this cold winter day, while we were carefully wrapping presents we'd soon give away … I realized that very moment the greatest gift we can give one another is time and attention: love from mom and dad, sister and brother. It’s never toys and things our kids are really after … but love, acceptance, guidance and laughter. Those are gifts of greatest import … for life, after all, is exceedingly short. And when I die and see my Father and my long lost son, I won’t be asked if I got my work things done. The real question and answer, whether good or bad, will be what I did with the life I had. Did I invest my time and attention in things that mattered most? Or was I swept away in material things, for which the world boasts? 

One is hollow, emptier than empty. The other is rich, filled to infinity.

A LOVE SUCH AS THIS

Of all the things I loved about parenthood, one of the things I loved most was to watch my young children sleep. I remember vividly this hot August night as little Mitch dozed off. My heart melted as I saw him with his ice-cold sippy cup, Spiderman Jammies and his two favorite blankets. Softly he slept after getting a bundle of hugs and kisses from his mom and dad. He knew he was loved.

Though we were exhausted at the end of the day, parenthood never felt so rewarding. And though we were poor as church mice, life never seemed so abundant. A testament that people, not things, bring us some of life's greatest joys.

As I stared at my son, the humanist in me would marvel and say, “Wow, I helped make that little person.” The young parent in me said, “I have no idea what I’m doing. I’m afraid.” Yet the deepest part of me said, “I have never known a love such as this.” 

Though my pockets were empty, my cup was overflowing.

 

CATCH THEM WHILE YOU CAN

There are so many layers to Mitchell’s Journey … so many stories to share. 

I remember taking our young family to the family ranch in southern Utah. I had nicknamed it, “The Other Side of Narnia” because there was something magical about ranch’s relative isolation from the world. At first I used to get frustrated cell signals are spotty at best – most of the time I don’t get one. But then, in a moment of sanity, I realized what a blessing it is to be cut off from the rest of the mad world so I could focus on the things that truly mattered.

One summer afternoon, just before the sun was about to set, I found Mitch, tiny Wyatt and my step-father sitting on a bench by a pond talking as only grandparents and grandchildren know to do. My heart swelled with gratitude to see this good man love my children. There sat a man who didn’t raise me and had every reason to be about other things that day. For that seems to be the work of men … to be busy building, chasing or collecting things. Instead, he choose to stay with my boys and spend time with them. 

In 1931, William Lyon Phelps wrote, “The final test of a gentleman is his attitude toward children. I wonder if all men remember as vividly as I do [how] grown-up people treated us …” I thought of that statement as I watched Garth … I was so grateful to see this good man spend loving time with my boys. He wanted them to know they were important and loved. That he invested time was good, but he invested his love and attention and that was greater. There is a difference.

My mother and Garth drove to our home the night Mitch passed away. I remember them both entering my son’s room, long after the sky became dark. They sat reverently at the foot of my little boy’s bed and seemed to peer upon him with sorrow, reverence and compassion. I don’t know what crossed Garth’s mind that night. Perhaps he thought of his own son he lost a few years prior. A son he loved dearly and misses so. As I looked at my step-father peer upon my dying son, I remembered this photo and tender moment between him and Mitch. To this day, I don’t think Garth knows what this singular moment meant to my son and how often Mitch reflected on it. I will forever be grateful for this moment.

I am just like every man that ever was. I am flawed and sometimes unsure of myself – and perhaps I’m more transparent than I should be. But I believe what you get should be what you see. I am also prone to build, chase and collect things. Any more, I am trying to build my family, chase my children around the couch in laughter and collect moments that matter. For in the end, those are the things that last. Those are the things that shape tomorrow and protect our hearts from a deeper form of grief and sorrow. 

These are the moments that matter most. When I die and see my Father and Son, they won’t care about the cars I drove or the depth and size of my treasure trove. Instead, they’ll care more about things one cannot see … the love in my heart and whether I gave to others in need generously.

No matter how brilliant or carefully our lives are planned, if we don’t give mind to the little things, we will miss life’s magic moments. Best to catch these little moments ... catch them while you can. 

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Note: Mitch loved fishing with all of his heart. This summer, Mitchell’s Journey is sponsoring an MDA Summer Camp activity named after our son. We want to help other young boys go fishing and make memories that matter. If you haven’t signed up for our Miles for Mitchell run, please do. This is the run that will help fund this activity and other things that matter.

Here’s the link to our charity run:
www.raceentry.com/race-reviews/miles-for-mitchell

ORDINARY MOMENTS

I remember walking down our stairs early one summer morning to find my boys playing quietly on the couch. Mitch slid down the stairs on his tummy and brought his favorite green and purple blankets with him. Ethan, being the stronger of the two, ran to the basement and lugged a plastic container filled with trucks, “guys”, and a medley of other toys upstairs. Both of my boys, gleefully unaware of their bedheads, began to play.

Mitch watched carefully as his brother showed him a trick from the top of the couch. “Ahhhh!” Ethan said with a descending tone as his truck tumbled down an imaginary cliff. I could see in my youngest son’s countenance that he was learning how to play in new ways, because of his brother’s example.

I sat on the steps quietly and watched these brothers just be themselves. My heart smiled. I always wanted children, and I knew I would love them. But I never knew how deeply I would love them. I simply wasn't prepared.

These were days of peace and serenity. Sometimes, when I grieve, I visit these lovely, ordinary moments in my mind and my heart finds rest. I am reminded that life was so good to me … and still is good to me. Though I carry the weight of grief and sorrow, I also feel gratitude and joy that serves as a counterbalance.

I can’t help but think how quickly these ordinary moments can slip by unnoticed. It is dangerously easy to confuse the ordinary as routine and uninteresting. Nothing is so taken for granted as the ordinary. Yet, when I think back on my earlier days, it is the ordinary that I long for. I don’t seek after the photos of our family standing at the gates of Disneyland or posing at some historical monument. I thirst for images of my ordinary life – for that is the substance of life. 

At least to me, those seemingly ordinary moments are like bricks. They may seem identical in shape, color and substance, but over time, as we lay them brick-by-brick, moment upon moment, they can make something beautiful. 

Though I cannot see with my mortal eyes what our little family has created, brick by brick, moment by moment, I can feel it with my heart. And in moments of grief, when the storms of sorrow beat at my weary soul, I can go inside that place and seek refuge. Those ordinary moments I’m tempted to think are nothing special are in reality, really quite special.