I SEARCH FOR WORDS, YET THERE ARE NONE

 “Dad, will you open the blinds so I can look out the window?” Mitch said softly as he sat up on his bed.   

Reverently, I lifted the blinds so Mitch could look out the window unobstructed.  I was quiet about it, too, for this was a sacred time when death was near, and the veil was thin.  It was a cold, wintery day and snow covered everything.  The light of late afternoon had become soft and warm as if to compensate for winter’s chill. 

The end was coming; man and medicine were powerless to stop it.

Mitch looked out the window in silence.  At that moment, his countenance changed from that of a young boy to one of an old soul emerging.  I asked him what he was thinking, and he shook his head as if to say, “Not now, Dad.”  Mitch then said, “I’ll tell you later.” 

He knew he was going to die, but he didn’t know he only had a few days left.  None of us did.

I watched my son in silence – respecting his need for space.  I searched for words, but there was none.  I wanted to hold him tight, help him feel safe, and tell him all would be okay.  But things weren’t safe, and he wasn’t going to be okay.  The end was coming; man and medicine were powerless to stop it.

I said a prayer in my heart, “Oh, Father, please … I’ll pay any price.  Can I take his place?”  I guess that was my way of bargaining – and I did it a million times a day.  With all my prayers, I knew that none of us could escape death – nor can we escape hardship.  I understood that it rains on the just and the unjust and we must learn to bear our burdens patiently.  I understood the wisdom of an old Jewish proverb, “Don’t pray for lighter burdens, pray for a stronger back.”  Although I always prayed for a way out - I also said, “But if not, please help us carry this burden.”

Little Mitch never told me what he was thinking that day.

This sweet boy lived out his remaining days as gently as he came into the world.  As death was gnawing and gashing at our door, Mitch surrendered his soul to God with the faith of a child and the heart of an angel.  He was a giant among men, and I was then, and remain today, deep in his shadow; for I am less than a shadow of a man.

In my darkest moments, I searched for words and found none; until I learned to quiet my mind and heart so I could see all that God had done.   It was then and only then I found gratitude in the midst of grief

One day, when I go to that place beyond the hills, I will thank my Father for loaning Mitch to me.  My son, my brother, my teacher – a gift burdened by adversity who taught me how to see. 

PENCILS & ERASERS*

The room was filled with muted sounds of shuffling paper, scissors, and student whispers.  The hallways and classrooms carried that familiar schoolish smell of crayons and glue … and for a moment I was transported to my own elementary school experience.  I remember my young years so clearly; and I especially remember being grateful for kind teachers who slowly, collectively, ushered me into the world.  Mitch was also blessed with kind and thoughtful teachers – and that made my heart glad … for under an educator’s care was my most valued treasure.

My heart began to pound as I peered through the window of the door and saw little Mitch working hard on his class assignment.  I was proud of the good boy that he was. 

We’re all students of life learning lessons at our own pace.  Sometimes we’re teachers – but we’re always students.
— Christopher M. Jones | Mitchell's Journey

As I began to open the door, the handle made a mechanical clank and Mitch immediately turned to see if it was me.  You see, we had a father-son lunch planned, and I had in my hand a paper bag filled with his favorite chicken nuggets.  At the same time, I carried in my heart more love than my soul could contain.

I’ll never forget the look on my son’s face when he saw me walk into his classroom.  I almost burst into tender tears.  “Hi, Dad,” Mitch said with a whisper, “are you still going to go to lunch with me?” 

I kissed his forehead, “Yes, Mitchie.  I have been looking forward to it all week.”  Mitch smiled and said, “Me, too.”  Mitch was designated Student of the Month and was highlighted as both a student and a young boy with interests and hobbies of his own.  It made him feel special to be recognized for who he was. 

Before we went to the cafeteria, Mitch was excited to show me the projects he’d worked so hard to complete.  In his folder, I could see papers with layers of light pencil marks made faint by erasers.  Evidence he was trying to get things right.  My heart was softened to see my child try so hard.  I thought to myself, “Oh, son … you are so sweet.  Dad is trying to do the same thing.”  I was grateful Mitch used pencils and erasers in matters of the soul.  He was so quick to forgive when his father was impatient or made a mistake and disappointed him. 

I’m grateful for pencils and erasers in life. They allow us a chance to re-do things we didn’t quite get right.  As we get older, we seem to give up pencils and erasers for pen and ink.  Some people write in permanent marker and imprison themselves and others with their faulty judgment, borne of pride or narrow insights.     

I admire children for their goodness and their innate ability to see with their hearts – because when they do, they see what really matters.  They see others as good people, just trying to do their best in life.  They write in their hearts with pencil and are quick to use an eraser.

As we left his classroom for the cafeteria, Mitch said, “Thanks for coming, Dad.”  By this time, I had a lump in my throat the size of a basketball.  I could hardly swallow, and my eyes were pooling with tears.  For my little boy reminded me what goodness looked like, what it acted like, and how it sounded.  I wanted to be more like him – and I vowed to set my set aside my pens and markers for pencils and erasers.  Heaven knows I need more pencils than pen, and even more erasers.

We’re all students of life learning lessons at our own pace.  Sometimes we’re teachers – but we’re always students.


I DON’T KNOW HOW TO HELP, BUT I KNOW HOW TO BE A FRIEND

Every-so-often we’d take our kids bowling for family night. In my culture, that’s a long-held tradition of dedicating one night a week to spend as a family. On these bowling adventures, we always enjoyed getting a plate of nachos, a chili dog, and a basket of french fries. The food was never good. In fact, it was awful. But, to spend time with family always seemed to make up for terrible food. Mediocre nachos just taste better when you're giggling.

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.
— Christopher M. Jones | Mitchell's Journey

Surrounded by bad food and good company, we’d spend the next hour or two cheering each other on while competing for the highest score.

By this point in his life, Mitch wasn’t strong enough to hold a bowling ball, so family members helped by positioning the ball on an adaptive bowling ramp.  Mitch smiled as he squinted his eyes and slightly moved the ramp at just the right angle.  Then, softly, he’d push the ball down the ramp, and it would hurl down the lane.  When he’d get a strike, Mitch would chuckle as I’d blend sports terminology.   “Great!  You got a goal!” or, “Nice touchdown, son.”  Mitch and I shared a pocket full of inside jokes that always made us smile.

On this occasion, Natalie’s sister and her family joined our bowling adventure.  Mitchell’s closest cousin, Hunter, was always by his side, cheering him on – both bowling and in life.  At one point, Wyatt placed his hand on Mitchell’s back and said, “Nice job, Mitch!”  At this moment, I thanked my Father for the gift of family and friends.  I was especially thankful Mitch had a loving circle of his own.  Mitch was blessed with genuine friends.

Just today I had lunch with a dear friend and colleague.  He’s had a blessed career, and I have admired his desire to serve others with his good fortune.  About two years ago, however, he experienced a tremendous personal hardship that broke his heart and shook his soul.  During his darkest hours, I remember praying fervently that he would find a measure of peace each day as he learned to walk his own journey with grief.  As we were catching up on each other’s lives, he shared something a friend told him during a moment of darkness, and I learned a beautiful lesson.  His friend said, “I can’t imagine what you’re going through.  I don’t know how to help … but I know how to be a friend.”

When I heard that tender phrase, I was overwhelmed by its power and simplicity.  It’s another way of saying, “I want you to know I care.” 

Those are beautiful, healing words: “I don’t know how to help, but I know how to be a friend.”  It acknowledges the uniquely difficult journey of the sufferer while offering a shoulder to lean on, a listening ear, and an understanding heart. 

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.

So, when I look back on this tender moment with little Mitch surrounded by kids who didn’t know what to do, but knew how to be a friend, I’m reminded of the supernal goodness of children. 

I cherish this memory. 

When I feel grief cast its shadow on my soul, I scoop into my pocket of cherished memories and pull out little gems, like this moment.  They fill my heart with gratitude, meaning, and purpose – which, combined, serve as a lamp unto my feet when the path grows especially dark.  Today I was reminded of another gem to serve a broken heart: that to be a friend is one of heaven’s healing arts.

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

 
 

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.