A BACKPACK FILLED TO OVERFLOWING     

Every day before Mitch went to pre-school he would carefully fill his backpack with his favorite treasures of the day.  I love how young children do that.  On the top of his bag his sweet mother wrote his name with a symbol under each word: a star to let him know he was our shining little boy and a heart to remind him he was loved beyond measure.

Memories and experience are all we really carry with us in life, and beyond.  And because our experiences are the things no economy or person can take away, they’re worth investing our time and attention.
— Christopher M. Jones | Mitchell's Journey

I always enjoyed seeing what he was going to pack – for each day was different, each day unique.  I often wondered what his treasures said about his state of mind.  One thing is for sure, he was a tender, sweet child … as all children are.     

My sweet wife would often place a secret note for Mitch and our other kids in their bags as they went to school.  She wanted them to know that she loved them and thought of them always.  And perhaps on a day that wasn't quite going right, this little note would be a lifeline of love for a discouraged heart in a sea of trouble.  As her husband, I would occasionally see one of her thoughtful notes in my own bag, too, and it meant so much to me.  If that small gesture of love meant so much to me, I can only imagine what it meant to our kids.  I love her for that. 

I had just taken Mitch to work with me in the spring of 2006, around the same time I took this photo.  Here is an excerpt from my journal:   

“I’ve been blessed to take Mitch to work on occasion. Often he’ll sit with me at the conference room table while I’m meeting with employees & contractors.  Sweet Mitch will quietly find himself coloring, playing with toys, and driving cars on my back and across my arms, or playing games by himself.  He is such a sweet little boy.

I’m always surprised how considerate Mitch is of his surroundings and how careful he is to not be disruptive. I suppose from a distance keeping him at an office for hours at a time is not very fun.  [Even still] Mitchie asks me if he can come … and he is so enthusiastic about it. Each time he comes to work with me I’ll bring a sleeping bag and pillow and we’ll make a comfy fort under the table – just like I would make as a young boy, but better.  I’ll surround him with toys and things to do and kiss his sweet face as he wiggles himself into his comfy fortress with a smile. I have so much fun with him.

Sometimes I’m tempted to call all my meetings off and spend the entire day making forts and playing with toys. I am not convinced age will diminish my desire to become a kid again.

After my meetings, I always take him to lunch and we talk about his favorite kitties and the blanket forts we’re going to make when we get home. I worry he’s growing up much too fast.”
  

Fast indeed. 

Seven years would pass in a flash and this little boy would no longer be with us.  As Mitch was collecting his childhood treasures through the years, as little children do, I was also collecting memories and experiences.  Memories and experience are all we really carry with us in life, and beyond.  And because our experiences are the things no economy or person can take away, they're worth investing our time and attention.

Like my son, I have a backpack of treasures I carry with me, only it cannot be seen … and it is filled to the brim with love and treasured memories.  Filled to overflowing.

 

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

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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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