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Mitch was at the hospital for a routine checkup with his neurologist. The frequency of visits had gone up because he had reached the age doctors wanted to start benchmarking his muscle wasting. I was always sure to clear off my schedule so I could go to the hospital with Natalie and Mitch. I never wanted Mitch to be scared and see an empty chair where his dad should have been. I never wanted him to feel alone. Until his dying day, I always tried to be there for him.

“I have come to learn when I invest in my family, it pays dividends for a lifetime. ”

— Christopher M. Jones | Mitchell's Journey

As we waited for the neurologist to arrive, Mitch and I sat at the examination table and had a make-believe battle with some toys the hospital gave him. When it came to parenting, I never lost sight of my responsibility to teach him correct principles and encourage him to govern himself. But when it came to playing … I always got on his level and played as though we were childhood peers. Mitch would get swept away in the little stories we would co-create. On this occasion, we imagined the exam table was the top of a snowy mountain … so high in the atmosphere, gravity was light, and you could see the stars at noonday. The fate of the universe was at hand, and the two of us were battling it out.

Mitch giggled as he found a creative way to defeat me and win the universe. I remember this moment like it was yesterday and it will always be close to my heart.

I have never regretted prioritizing my family. Not once. Though I’m an imperfect parent, I have come to learn when I invest in my family, it pays dividends for a lifetime. This moment was just such an investment, and my heart is paid with gratitude and love … and that heals me.

Tonight, I will invest time in my children like I did this day with little Mitch. I will try to give them all of me and let them know how much I love them. For not many years from now, I will look back on today and either pay the price of regret or win the glad dividends of doing the right things at the right time and be glad I lived the life I lived.

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When it came to his imagination, little Mitch left no detail behind.  His imagination was intricate and full of endless possiblities.  

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Photo Credit: Scott Winterton

Mitch was barely home on hospice. The hourglass that counted down our precious days and hours was all but invisible, and we didn’t know if his little heart would give out in 5 days or 5 minutes. So we clung to each moment like a weary traveler might hang to a flask of water in a desert.

“I love that heavenly paradox: when we lift others, we too are lifted.”

— Christopher M. Jones | Mitchell's Journey

During this time, Candice Madsen, a producer with a local news agency (KSL), had been telling our son’s story on the news. She was professional and courteous … and most importantly, she was deeply compassionate. At one point, she sent me a message asking if a former BYU football player, Andrew Rich, might come over to wish Mitch well. During the height of his athletic career Andrew thought football was the most important thing in his life, but then he had a baby and, like me, his world turned upside down and right side up. When he learned of our little boy’s struggle, his heart turned to our son with compassion.

So, on this cold February night, Andrew brought the warmth of humanity into our home. He sat on the edge of our couch, next to Mitch, and shared a few photos of his little baby who also had heart complications as an infant. Then Andrew did what great humans do, he turned attention away from himself and encouraged a person in need. He told little Mitch how strong he was and that he cared. I sat on the couch and fought back a river of tears as I knew Mitch needed every ounce of courage and strength he could get. In truth, so did we.

After a while of conversation, Mitchell’s energy began to fade, and he asked to lay down. Natalie rushed over and scooped our little boy in her arms; his hands seemed so heavy. Just then, Andrew reached out and held Mitchell’s hand and squeezed it – as if to give him a hug. I saw a look of compassion and love in his countenance that warmed my heart.

Mitch was touched by his kindness and wondered why anyone, especially a stranger to him, would even care. He often said things like, “I’m just a kid,” struggling to understand. Later that night I sat on the edge of his bed as Mitch asked me why so many strangers took an interest in him. My eyes filled with tears as I explained that people care because they know how precious children are. Then, I could barely utter the words as Mitchell’s eyes filled with tears, “You, my son, are the very best part of me and I want to be good, just like you.” Mitch reached out his tired arms gesturing for a hug. We both wept, father and son, as we held each other – trying to lift each other’s heavy hands.

Mitch would have another good week ahead of him. He played with friends, spent time with family, and got to do many things he loved. I put my entire world on pause and tried to love this little boy with everything I had. It was a tender and fragile time: both beautiful and heartbreaking.

After that magical week, death came clawing at our door. Another week would pass, and Mitchell’s vitals would deteriorate as we felt death’s coldness breeze seeping into our home. Saying goodbye was terrifying beyond all description and broke every single part of me. Then came grief – a journey that would break my broken pieces.

I have spent the better part of 3 years processing the death of my child. I still grieve deeply, though writing has become my therapy and helped me process the meaning of things. Yet, in moments of deep grief, when my hands (and heart) feel especially heavy, I have learned to turn my attention to others, and I try to lift heavy hands, just like Andrew Rich. I love that heavenly paradox: when we lift others, we too are lifted.

May we spend this year in the service of others, lifting heavy hands; for we are all weary travelers and we are meant to help each other along the way.

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I remember his tiny smile as he sat in a school bus for the first time.  Mitch was about to leave on a new adventure.  He didn’t know where he was going exactly, he only knew his mommy loved him and trusted she knew best.  Natalie kissed Mitch on the forehead and said in a whispered tone, “I love you, little boy.  I’ll see you at school.” 

“This life is a heavenly classroom, clothed in mortal cares ... where we learn to trust in heaven while carrying hardships from here to there. ”

— Christopher M. Jones | Mitchell's Journey

As the big bus drove out of the neighborhood Natalie jumped in our minivan and followed them to the elementary school several miles away.  By the time the bus arrived at school, Natalie was there to help our little boy off the bus and usher him into class.  

To Mitch, the world was a very big place – made even bigger by his declining muscle strength.  A small staircase to you and me may as well be Mt. Everest to a child with DMD.  Mitch could be easily knocked down by a simple bump in a lunchroom.  Hallways made him nervous because a river of preoccupied people, in a rush to get some place, threatened to trample him unaware.

Natalie knew our son needed help, but wanted to stretch his horizons and help him grow.  So, she repeated the inconvenient routine of helping him board the bus each day and then follow him to school – where she would help him on and off the bus.  Natalie wanted our boy to learn independence.  And that he did. 

I loved this day.  I loved seeing my little boy smile at me through the window of the bus.  Mitch had this look on his face that seemed to say, “Look Dad!  I can do hard things.  I’m a big kid now.”  His eyes seemed to say, “I love you.”

I remember walking with Natalie and Mitch into his preschool class for the first time.  There he would meet “Mrs. Nancy.”  She was energetic and kind and had a way about her that brought instant relief to nervous parents and excitement in the minds of her students.  I loved her immediately.  I’ll write more of her another day – but I am grateful she was placed in our son’s path.  She was a tender mercy for our little boy.

In many ways, this image serves as a symbol of another journey.  Only this time Mitch has been shuttled to a place far from sight.  Sometimes I panic because the mortal father in me wants to know he’s alright.  Yet, I know he is fine – and in a heavenly sense, I realize he was never mine.   For Mitch is my brother, the son of my Father … even still, in his death, my mortal heart is still bothered.  For I love and miss him, you see.  And in my agony, I reach deeply for things heavenly.  Could it be that is the reason for suffering?

Somewhere out on the horizon is my son … or rather, my brother. He is at a school of another sort.  I cannot see it with my eyes … but I can feel it with my soul.  Though he may be learning and growing … I also believe he is here, even now, helping and showing. 

Now it is my turn, seated in a big and unfamiliar bus.  Like my son, – I have learned to listen and to trust. I know my Father loves me and believe that He knows best.  The wisest of all parents, He knows the growth that happens when we’re challenged and given tests.  This life is a heavenly classroom, clothed in mortal cares ... where we learn to trust in heaven while carrying hardships from here to there.  

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Tiny Mitch reached up to grab a door handle that stood just above his head.  He had an almost tangible curiosity about him this day – so much so, he would have seemed mischievous if he wasn’t so innocent.  With a soft tug, his chubby hand and tiny little fingers began to pull downward.  If you were listening carefully, you could hear the old springs in the handle ping and poing as rusty mechanics began to move.

To an adult, this was just an ordinary doorknob.  To this little boy, that golden handle was a gateway to endless curiosities just beyond the finger-smudged glass.  

“... when I think I’ve reached the furthest depths of love for my children, I find that it continues to deepen with each passing day. How deep that love will go, I cannot say. I only know my love is deeper than it was yesterday.”

— Christopher M. Jones | Mitchell's Journey

Tiny Mitch didn’t realize I was following him, so I kept my distance and zoomed in with my lens.  By this time in his life, he was so used to sounds of my camera he had no idea I was shadowing him.  I followed him because I wanted to keep my tiny boy safe from harm … but I was also curious to get a glimpse into his little mind and heart.  “I wonder what he does when no one is looking …”, I thought to myself.  

As the door opened, Mitch walked outside … and, like a good little boy, he closed the door behind him to keep the cold Wyoming wind from stealing away the warmth of the cabin.  Then Mitch crawled backward from the edge of the old wood patio, down a few stairs and began to tromp on grass browned by an early winter’s chill.  I waited patiently until his back turned, then I opened the door quietly and stepped outside.  A kitty approached him and Mitch began to talk to it in ways only a 2-year-old can know.  Softly he hugged his furry friend and kissed its head.  I smiled at Mitchie’s goodness and wanted some of that to rub off on me.  After a few minutes of furry love, Mitch began to walk toward a bush that was home to a little bird’s nest, or so it seemed.  He got on his tippy toes as he pulled a branch down only to see an abandoned nest.  He smiled softly, then turned to explore a pile of wood.  He talked to himself and hummed nursery songs.  At this moment, my heart broke open and poured out more love than it could possibly hold.  I never knew how much love a heart could hold until that moment.

What I learned about little Mitch that day was how much he loved to be alive, even as a toddler.  I also discovered anew how much little things matter. He found joy in the smallest of things.  There wasn’t a flower he walked by that he didn’t lean in to smell softly.  Not a furry pet he didn’t want to love, or a sunset admire.  Mitch not only taught me how to love him, but how to love everything and everyone.

Later that night I knelt in prayer thanking my Father for the gift of little ones.  I thought I had known love before I had a child.  But, I soon discovered a love so deep that it changed me from the inside out.  Completely.  Even still, when I think I’ve reached the furthest depths of love for my children, I find that it continues to deepen with each passing day.  How deep that love will go, I cannot say.  I only know my love is deeper than it was yesterday.

If ever I am discouraged about a personal failure or disappointment, this image gives me hope.  It reminds me that, in the grand scheme of things, we’re all toddlers reaching to open doors and make new discoveries.  And though we may be imperfect, our Father sees us reach and try, and we are loved.  That is no small thing.