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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.

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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.”

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Each year Mitch was invited to go to the mobility lab at Shriners Hospital where technicians would attach sensors to his body and, with the help of sophisticated computers and cameras, model his mobility and muscle decline. I was always there to document the experience. While doctors were capturing his muscle movements, I was there to capture his beautiful, tender soul. Most importantly, I wanted my son to know how much I cared about him. I never wanted him to turn around and see a cold, empty chair where I should have been. I did my best to cheer him on until the very end. Although his body was getting weaker with each visit, I saw his countenance and kindness grow ever stronger. Sometimes the strongest angels have broken wings.

In this photo Mitchell’s Aunt Sonya, a pediatric physical therapist at Shriners, ran with Mitch and turned what might be a scary experience into something fun for him. She was a special tender mercy to our family. She loved little Mitch with all of her heart, and he loved her like a second mother. Sometimes guardian angels blend in with the rest of us.

Mitch smiled as he faithfully completed each task. With each routine doctors had him perform, their computer models of our son began to replay his movements with incredible detail. On their screen was a wireframe of a person walking, jumping, or standing up from the floor exactly as Mitch did moments prior. The same technology to capture body movements for movies and video games was being employed for medical purposes and Mitch thought it was fascinating.

What might have been a trivial set of routines for a healthy child was much more difficult for Mitch and he always left the hospital exhausted. One of the early challenges DMD parents’ face, while their children can still walk, is hearing comments from people who seem dismissive and comment on our child’s large calf muscles. “Look how strong his legs are!” they say with a slap on your back, “You guys are going to be fine” not realizing what looks like muscle is actually scar tissue. The truth is, the stronger (bigger) their legs look, paradoxically, the weaker they are. Thus enters the very real feeling of being misunderstood and further isolated from the world. 

Gathering mobility data from Mitch was not only important for tracking his own health, we felt a responsibility to the DMD community at large, to contribute whatever we could to a much needed body of knowledge. We were just a tiny, invisible family and what little we could offer, we gladly handed over.

As we left the hospital I began to think deeply about our experience that day. I wondered what would happen if we applied as much effort to examine our inner selves as we do our outer selves. It is so much easier to observe and tend to broken bodies, than tend to broken souls. 

So, when I stumbled across this image early this morning, I immediately wept for my son. I saw my little boy who loved his life, and suddenly it was done. I then renewed my promise, to my Father and my son, to live a life examined and to love everyone. 

Yes, there are broken things to mend and I am sure to stumble a million-and-one times … times ten. It won't be easy … in fact, I know it will be hard. And when I reach the finish line, I am sure to have some scars. But all of that will be a small price to pay, including grief and pain, for those are the things worth examining from which we stand to gain.

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I had a moment of truth in my life many years ago. I was lost in a different kind of wilderness – not a wilderness of grief and sorrow but a dark wilderness just the same. The path before my feet was shrouded in a deep fog and for a while I didn't know if God even lived. I understand what atheists think and feel and I have explored their arguments and logic, none of it is lost on me. And, for a season, I suppose I was counted among them. But then I made a choice to truly open my heart, mind, and soul to the possibilities and something remarkable happened.

So while I was wandering in the wilderness of doubt and darkness I remember searching for peace and understanding and for light. After months of study, soul-searching and preparation I remember kneeling at the side of my bed as a young college student and asking my Father if He was there if He even existed in the first place. That very moment I was overcome with an impression I cannot describe. It was at once distinctly spiritual and at the same time deeply emotional. I knew the difference between the two. One thing’s for sure, it was undeniable and not of me. There I knelt as a young, broken and once-confused 18-year-old and I was given eyes to see and a mind to comprehend. I wept. And I wept. I came to know with a certain knowledge that day we have a Father who lives and loves us … and all that happens in this mortal place is for a greater purpose. That experience and a few others that followed prepared me for darker woods yet to come. Darker, in fact, than I had a mind to imagine. Only the next time I journeyed in the wilderness I had a candle that I might see.

Fast forward more than two decades and I found myself on the edge of my son’s bed as he folded his tender arms and said a prayer of his own to his Father … our Father. He had a week to live and despite the heavy burdens he shouldered, this little boy carried a heart overflowing with love and gratitude. I remember watching little Mitch humbly fold his arms and close his eyes as he spoke with his Father in a spirit of deep thanks. He asked for nothing. Once again Mitch reminded me of one of my favorite sayings, “Gratitude turns what we have into enough.” For Mitch, he always had enough.

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I realize that I speak of my personal faith in God often. It is never my intent to sound preachy, fanatical or pretentious; I am only sharing my experience and feelings as they truly are. Why I do this publically, I still do not know. One of the reasons I write of God is I think it’s difficult, if not impossible, for anyone to peer into the deep abyss of death and not contemplate what’s on the other side if anything at all. In my estimation, the reality of God is either child’s play or it is the only play that really matters. 

So, as I knelt at my son’s bed, hearing his soft voice and even softer sentiments, I wondered in my mind and heart how my little boy so broken could be so put together. This little 10-year-old was a towering example to me that I can smile even when all seems lost. He showed me that though broken, I needn't fall apart. Suddenly I remembered that experience kneeling at my other bed so many years before and I felt an echo of those same heavenly impressions again. 

In what seemed the blink of an eye from this little moment, I found myself broken-hearted and struggling to breathe at my son’s funeral. While preparing for the funeral I asked a dear friend of mine, Kenneth Cope, a talented musician and man of faith to sing one of his songs at Mitchie’s funeral. He was so kind and gracious and performed, “Broken.” Here are the first 3 verses:

Broken clouds give rain
Broken soil grows grain
Broken bread feeds man for one more day

Broken storms yield light
The break of day heals night
Broken pride turns blindness into sight

Broken souls that need His mending
Broken hearts for offering
Could it be that God loves broken things

I loved that song when I first heard it. I loved it even more when my friend sang this song at my dear son’s funeral. As I listened to his inspired words through song, I couldn't help but think about why we break and what comes of it. Although my son’s broken heart touched mine –in truth, Mitchell’s broken heart broke mine. 

I am grateful my friend Kenneth gently reminded me broken things can give way to better things. I am grateful Mitch taught me though we may break, we needn't break apart. And I am thankful for my Father who has shown me time and again, broken things can indeed mend ... and often, to a much greater end.

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