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“Though at times, I may feel my plate to be small and my chicken nuggets few, I can find gratitude with what I have … for I have a plate and chicken nuggets.”

— Christopher M. Jones | Mitchell's Journey

Little Mitch sat quietly at our kitchen counter ready to eat lunch. His dear mommy prepared a plate of warm chicken nuggets and a dollop of ketchup. Chicken nuggets and macaroni and cheese were among his favorite lunchtime meals. Though we were struggling to make ends meet at the time, Mitch always felt like he ate like a king. It didn’t matter if he had a bowl of Top Ramen or a grilled cheese sandwich, Mitch appreciated everything.

While his older siblings were at school, Mitch found ways to keep himself company. Wherever he went, he carried little treasures with him. Every day, we would find them in his small pant pockets, his backpack, lunch pail and in his tiny hands. As I watched my little son, I began to discover these things were more than tiny treasures … they were symbols of his affection. Suddenly, I was reminded of the passage, “Where your treasure is, there will your heart be also.” When I saw my son’s treasures, I knew where his heart was. 

So, on this warm afternoon, I saw my tiny son carefully place his little treasures around his small lunch plate. On the left was his favorite racecar; Mitchell’s muscles were weak, but he was learning to be more active and he loved how he felt when he was on the move. This car was a symbol of his love for movement. Next to this car stood his puppy, which reminded him of our family dog and the love he felt for her. Then, a figure of a little boy which represented himself. Standing next to him was another figure Mitch called dad. Never did I see those two characters apart … they were always, always together. Finally, on the far right was Buzz Lightyear, his noble protector, a shield from anything that might cause harm to the things he loved. My heart melted when I saw this tender display of affection.

Later that day, I started to notice the same thing with my other children. Each had treasures unique to them. I wasn’t just fascinated by what they treasured, but how they treasured it and what each treasure revealed about their hearts. Every bookcase, drawer and collection revealed something about their little minds and hearts. What might have looked like a mess was actually a message. And suddenly, I was listening.

My sweet wife always seemed to notice our children’s treasures (and hearts) naturally … but I had to learn the slow way. But, at least I learned. 

What I learned from my children was everyone has tiny treasures, even adults. What we do, and cling to, is an evidence of where our heart is. 

What always struck me about Mitch was how he seemed to treasure everything and that he was grateful for whatever he had. During his darkest moments I heard him say things like, “Well, at least I can walk” or “At least I’m alive.” I may be guilty of many things, but I never want to be guilty of ingratitude. Little Mitch taught me that no matter how difficult a moment may seem, I can always find something to be grateful for.

Though at times, I may feel my plate to be small and my chicken nuggets few, I can find gratitude with what I have … for I have a plate and chicken nuggets.

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“Of grief and healing, I have much to say. Despite the heartache and deep dismay, I’ve discovered portions of peace aren’t so far away. ”

— Christopher M. Jones | Mitchells Journey

Tiny Mitch was seated at our old kitchen table about to celebrate his second birthday. He was a gentle child who had a loving and tender disposition about him. I always felt like Heaven loaned us something special when it came to Mitch. I know that all of our children are special, truly special, but there was something unique about this little boy and I couldn’t put my finger on it.

Natalie made cupcakes which our kids and some cousins decorated. Ethan had cheated and already stuffed a cupcake in his mouth, as evidenced by the crumbs on his face. He was a turkey, but we loved him so. Laura-Ashley stood by her baby brother with her eyes set on the cupcake she wanted. The cousins stood transfixed over the mouth party that was about to take place. Oh, to be a child again …

Mitch curled his tiny fingers as Natalie slowly lit each candle. As I took this photo I received that same impression I had on the day of his birth … that something was wrong with my son. I wondered to myself, “Who are you little Mitch? What is happening with you? What are you meant to do?” I couldn’t see into the future; I only sensed a storm was brooding over the horizon and my soul shuddered. 

After the candles were lit, tiny Mitch attempted to blow the candles. After a few attempts, the candles were out and the kids were enjoying their sugary treats. My memories of this evening are vivid and I can’t help but think how grateful I am that the time spent investing in our children pays dividends for a lifetime. I am glad I wasn’t too busy to be a dad. I know I’ve got a lot to improve on – but I got this day right.

Later that night I rocked tiny Mitch in my arms. As he lay softly in my embrace, he would reach up to touch my face with one hand as he held his sippy cup in the other. I would sing songs to him, tell him fantastical stories, and say him I loved him repeatedly. Soon, my baby drifted off to that place of magic and dreams – and the little boy in me wished I could follow him to Neverland. In that moment, never a child seemed so at peace. Never a father just the same. I held him a little longer, not wanting that heavenly moment to end, grateful for the gift of parenthood. There was nothing in the world I wanted more than what I held in my arms in that moment. As I tucked him in, Natalie, the sweetest mother I have ever known, kissed his face ever so gently. 

I remember kneeling at the edge of my bed that night, long after everyone was asleep, thanking God for the gift of family. I was deeply flawed and felt inadequate as a husband and father, yet I was given the greatest gift in all of humanity: family. 

A year later we would learn Mitch had DMD and that he would likely die in his late teens or early twenties. We were told his muscles would soon atrophy and he would stop walking before he was a teenager. Not long after, he wouldn’t be able to lift his arms or turn over in his bed. His sweet little body would get weaker and weaker until he wouldn’t be able to breathe on his own. Eventually, his heart, also a muscle, would succumb. Death was certain, but when was not.

It was at this same table I wept while reading medical texts that described the horror show I would soon witness. Not only did it detail what DMD does to the body, but what it does to the family. We were told by many that most marriages don’t survive … that this would not only break our hearts but most likely break our family. So, as if one were to brace for a tidal wave, Natalie and I clung to each other and promised to never let each other go.

It was at this table, in the still of night, I knelt in prayer begging my Father for a way out. My son would not be spared. In fact, because of early heart failure, he would die much sooner than anyone imagined. Exactly the opposite of my heart’s desire. Just because I didn’t get want I wanted, doesn’t mean Heaven doesn’t care. In fact, I recognize tender mercies that show me He is here, there and everywhere. Most importantly, I see evidence that He cares.

Mitch had an impression similar to the one I had about him, another tender mercy. When he came home from the hospital, not knowing he was going to die, he said, “Mom, my birthday feels so far away. Can I have an early birthday?” It was unlike him to ask for any such thing – and we knew that he sensed change was happening. Mitch had an early birthday – which was a gift to our son and our family. He was just as tender that day as he was in this photo.

Tomorrow is my son’s birthday; he would have turned 14 years old. It’s been 3 years since he left our family and I wish I could say grief was a thing of the past … but it is not. As long as I’m mortal, deep grief will last. Grief is a struggle; sometimes peace seems so far away. That is until I recognize healing is a process, not a destination, and I can nurture it each day. 

Of grief and healing, I have much to say. Despite the heartache and deep dismay, I've discovered portions of peace aren’t so far away. 

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"Dad, will you hold my hand?" Mitch asked softly. My heart melted as I reached down to grab his hand.

Mitch and I never simply held hands, we hugged hands. That simple exchange between us was both playful and deeply felt. Sometimes we had a contest to see who could give the biggest hand hug. Those are some of my favorite memories.

While holding hands, we often didn't say much. We didn't need to, for we had a conversation through our hands. All the love in our hearts was expressed by gentle squeezes that said, "I love you more than words can say." 

I didn't want Mitch to go anywhere that he didn't know he was loved beyond words. I wanted him to know his mom and dad would catch him when he fell. Always. If I couldn't heal his body, I at least wanted to heal his worried soul, and I knew that love heals.

I miss that voiceless exchange; that unspoken love which was often felt more than heard. That's what children do: they show us a kind of love where words, at times, are inadequate. Even barren. 

Although I was blessed to hold Mitchell's hand for a season, he now holds my heart forever. He was worth every piece of my broken heart. Even if I cried a million years, he would be worth every tear. 

As Mitch lay on his bed, about to pass away, I know he felt me squeeze his hand like I used to. I know it because he squeezed mine back, only this time, his squeeze was weak, like a candle about to flicker out by the winds of change. I hope, when his tender heart was worried and afraid, that he felt my unspoken love. I hope his soul felt, in a most tender and loving way, "I love you more than words can say."
 

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Mitch lay patiently on the cold hospital bed as the medical technician began to record his heart function. I saw my son’s countenance drift to some far-off place and it seemed as though he were contemplating heavy thoughts; the kind of thoughts elderly people think at the twilight of their lives. Here was a young boy who should have had a lifetime ahead of him; instead, an invisible monster in his body was devouring his heart. At this point we knew his heart was failing, but not even the doctors knew how quickly things would unravel.

It wasn’t until this moment I realized Mitch sensed something was happening – and that something was not good. From the day of his birth I had a strong impression he would have a short life. But now Mitch was beginning to sense the same thing. He didn’t like going to the hospital for tests, but he bore that burden patiently. He didn’t like that his muscles were getting weaker and that he couldn’t play like healthy kids, but he carried that burden with a grateful heart for the things he could do. My little son has shown me how to bear my burdens patiently. I am not as good at it as he was, but I’m working at it. 

I often wondered if those working in the hospital ever thought about what happened on the other side of their hospital doors. We go in sick, and if we’re lucky, we leave recovering … and alive. These professionals see a constant stream of broken bodies and I am sure that is numbing – but I wonder how often they pause for a moment and see broken souls. It doesn’t take much to bandage that, too. 

With few exceptions, almost all of our doctors were both professional and human. They were cardiologists, but they were also fathers. They were nurses, and they were mothers too. I always appreciated the medical professionals who attacked a medical problem with clarity and vigor but remembered there was a frightened child and trembling parents who just wanted one more day. As patients and parents, we don’t need our doctors to be pseudo-psychologists, we just needed to know they care – even if only for a moment. 

We left the hospital this day a little shaken up; afraid of the future and unsure of what was to come.

As we were walking out of the hospital Mitch said in his soft voice, “Dad?” 

I turned to him, “Yes, son?” 

“Can I go to work with you? I just want to spend time with you.”

My heart fell to the floor, “Of course, Mitch. I love to spending time with you, too. You can sit at my desk and play Minecraft, help me file some papers and organize my drawers. Then we can go to the Olive Garden for lunch.” 

Mitch smiled and I smiled back, then I turned my head and wiped the welling tears from my eyes.

And that is just what happened. Mitch went to my office the next day and we spent time as father and son. Time I will never forget. Time that, in retrospect, was more valuable than all the treasures of earth.

In a few hours Natalie and I will speak at the University of Utah School of Medicine and share Mitchell’s Journey. There we’ll offer a candid look at what happens in the lives of those who fight for life and eventually lose. We hope to lift the curtain a little on what happens on the other side of the practice of medicine – so that when they are tempted to rush patients through a system designed to fix bodies, they might pause a moment and remember. Remember little boys and girls, like Mitch, who are frightened and in need of hope and a kind smile. For compassion is a kind of medicine, too.