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

 
 
LIGHTS FEST

Tonight we attended the Lights Fest along with supporters and Mitchell's Journey volunteers. It was a beautiful event filled with feelings of peace and acceptance.

I had an opportunity to stand before a crowd of a few thousand people to briefly share what our foundation is about and invite them to learn more about little Mitch and the stories we share.

The moment I got home, I made this video of tonight's events which includes video from my aerial camera. Though I have always wanted to participate in an event like this, I wanted more to see Natalie send something heavenward with a note to little Mitch. You'll see that in this video. I deliberately didn't add any narrative because I want its viewers to contemplate their own journey and what message of hope, faith, and love they might put on their own lantern.

We are grateful to the Lights Fest for including our foundation as one of their sponsored charities and for giving us an opportunity to raise awareness and challenge others to get involved.

Below are a few photos from tonight, starting with Natalie's lantern with a note to Mitch.



Shots of the Festival


Austin Bennett and His Family

File Sep 16, 11 18 15 PM.jpeg
TRAVELING WELL

Today has been marked Duchenne Awareness Day - so I wanted to re-share this video in hopes of showing the impact DMD has on children and families.

Though the scope of Mitchell's Journey goes beyond the medical condition of DMD as it contemplates the human conditions of faith, hope, and healing, I want to do my part to raise awareness. I want people to know what took my little boy away from me.

A life of true significance doesn’t say, “Here I am, look at me!” but rather, “There you are, how can I help?”
— Christopher M. Jones | Mitchell's Journey

In the most unexpected ways, my heart is especially tender today. Tender because I miss my son and tender for the many families who fight for their children still living.

We will all die at some point - that much is certain. But how well we live between now and then ... how we help others along their journey, is what makes our lives significant. Little Mitch inspires me to live a life of quiet significance.

A life of true significance doesn't say, "Here I am, look at me!" but rather, "There you are, how can I help?"

May we all find a way to not just travel through life, but travel well.

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Recently I was asked to serve on the board of Parent Project Muscular Dystrophy, the same group that tried to save my son's life and who works tirelessly to unlock the riddle of DMD. I honor that organization and hope to serve them well - to help put a face to a fatal illness that broke my heart and give hope to those who face that same fate.

https://www.facebook.com/parentprojectmd
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20 YEARS
It was a perfect day.  To be clear, life wasn’t perfect – but as days go, it was perfect.
— Christopher M. Jones | Mitchell's Journey

It wasn’t many years ago Natalie and I took little Mitch to Shriners Hospital for a check-up.  The leaves were crunchy and the season had changed from a hot summer to a crisp, cool fall.  I love every season for many reasons; each is beautiful in its own way and I’m grateful for the reminder that things are temporary and everything changes.

I remember this day so vividly.  Mitch was ever-so-tender and Wyatt was full of life and energy.  Natalie chased the boys around the park as they threw leaves in the air and giggled.  Sonya, Natalie’s sister, worked at Shriners and left the hospital to enjoy a little of the afternoon with us.  It was a perfect day.  To be clear, life wasn’t perfect – but as days go, it was perfect.

Little Mitch was young and our hearts were tender – our fear of the future, raw.  I made it a point to go to the hospital with Mitch as often as I could.  In fact, I almost never missed an appointment because I didn’t want my little boy to see an empty chair where his daddy should have been.  I wanted him to know how much he mattered and that I cared – for I knew a time would come when he would have to step into the dark abyss of death and I wanted him to be assured we were always at his side.  That abyss came much sooner than we ever imagined and I know in the quiet of that sacred winter night, my son didn’t feel alone. 

This photo was taken almost exactly 10 years ago; and today, that's about the half-way point in my life with Natalie, thus far.  Today marks our 20th anniversary. 

That’s 20 years I can’t get back and 20 years I would never give away – not for anything.  This dear woman has been the best investment in time, energy and love I’ve ever made.  Because of her, I’ve had 4 beautiful children and 1 amazing soulmate.  I am a better me when she is around and I’m forever grateful for her.

In honor of our 20th anniversary, here are two essays I’ve posted on anniversaries past that describe the thoughts and feelings of my heart. These words aren't still true ... they are more true today than the day I first wrote them.


JUST THE BEGINNING (2014)


This Essay is part of the September Seasonal Content.  Visit each month to get more.

August  -  September  -  October  -  November  -  December


 

September 6, 2017  |  7:20PM

The best 20 years of my life have been with this girl. Tonight I gave her a surprise anniversary gift that represent her greatest treasures. Her dad took this photo and I had it framed to include little Mitch.