USUALLY MORE THAN ONE*

When I close my eyes and think back on this moment, I can still smell that faint, earthy whisper of fallen leaves as my boys wrestled in a freshly gathered pile. The ruffles and crunches, blended with the giggles of my boys still play in my ears as though it just happened. “Hey, Effie, let’s throw leaves in the air again”, Mitch prodded his older brother. “We can pretend we’re in Lord of the Rings or something.” Ethan, not knowing what little Mitch meant, reached down and began to gather leaves in his arms. Mitch, eager to make believe, already had his armful.

I laid on the ground quietly and took photos from the perspective of a field mouse, looking up at my little boys who had a giant imagination. I loved this moment and the moment immediately after this photo was taken when the sky was filled with golden snowflakes made high by little boys who loved to play.

I recently stumbled across this quote: “Isn’t it strange how autumn is beautiful, yet everything is dying?” I love this quote, not just for the arrangement of words, but for the meaning it conveys. I have discovered that beauty can be found in almost anything if we look for it.

To be clear, seeing my son slowly die was not beautiful – in fact, it was a horror show that broke my heart and soul. Yet, when I look back on the tender mercies we received during that time from a loving Father, I know we are we are not alone. I know that heaven walks before us and prepares the way for all that we experience. The truth is, we are rarely spared suffering, but we can be given comfort in times of need … and there is a certain beauty in that.

For every difficult thing I’ve experienced, I’ve learned something about its counterpart. Poverty has taught me the value of a penny; suffering the splendor of peace. Death has taught me to appreciate life; grief has shown me the value of time.

When the skies darken and I'm tempted to give up, I stop and count my blessings ... I name them one-by-one. For every negative, I have discovered a positive – and usually more than one. It is humbling to see all that God has done - not just for me, but my precious little son.

 

BITTER PILLS CAN BE BLESSINGS

Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.

I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time.
— Christopher M. Jones | Mitchell's Journey

For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him. 

I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.

And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.

Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.

I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.

Thirty minutes later, he was gone. I know he heard me. I know it. 

The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.

Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me. 

So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.

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.

AS LONG AS I HAVE YOU, I’LL CARRY YOU

There was a point where Mitch was on the razors edge of ability and disability. This was the point in his life he began to witness his physical strength slip through his fingers like sand on a windy day. No matter how much he tried to keep his strength, it simply would not stay.

Because he seemed vaguely normal, it was easy for others to dismiss his physical needs. Mitch often grappled with whether or not he should drive his scooter or try to walk. For a while he asked his mom or myself to carry him so he could go distances, then be set down to walk on his own and not stand out from the crowd. He wanted to feel normal as long as possible. Natalie, his tender mother, spared no inconvenience to help him feel normal and empower him to be all that he could be.

On this day I remember hearing Mitch ask in his soft voice, “Mom, will you carry me?” Natalie whispered, “Oh Mitchie, as long as I have you, I’ll carry you.” I’ll never forget how Mitch smiled as he wrapped his arms around his mom and how she carried him down a sidewalk. Mitchie smiled at me as if to say, “Dad, I’m the lucky one.”

I cannot remember a single time Natalie ever complained about caring for Mitch. That’s what love does, you see: it turns burdens into blessings. Sure there were days of exhaustion and discouragement, even moments of grief and fear. But in the end, caring for our little boy meant we still had him - and having him was worth the weight of everything.

Sometimes when I look at all that weighs heavy on my shoulders I can be tempted to think my burdens are my enemy … after all, they hurt and they’re heavy. But when I quiet my heart and try to look at life through heaven’s lens, I know whatever burdens I encounter are not only tender teachers … they are my friends.

Still, when I examine my life honestly, I wonder why my Father even puts up with me – a soul so rebellious and proud as mine. The child in my heart wonders if I’m more work for Him than is worth it. Then, like a whisper, I feel a nudge back to this moment with my wife and son. I remember how much I love my child, no matter how broken he might have seemed; my love for him is infinite and stretches to eternity. 

If I would carry my son gladly … patiently … might my Father do the same to me? Something tells me we’re all being carried in ways we cannot yet see. 

Perhaps, when all is said and done, we’ll look back on our lives ... hardships and all ... and say, just like little Mitch, “I’m the lucky one.”