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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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“Mitchell’s Journey isn’t only about what happened to my son, but what is now happening because of him. ”

— Christopher M. Jones | Mitchell's Journey

Over the last 3 years, I’ve written much on grief because that was my overwhelming reality. I have discovered that, when it comes to the death of a child (which is different than any death I’ve ever experienced), you don’t get over grief … you don’t move past it … you just learn to live with it. You learn to live with chronic pain. Because of that reality, I will still write of grief and my personal journey of healing – but I have much more to say than my personal songs of sorrow.

Mitchell’s Journey isn’t only about what happened to my son, but what is now happening because of him. So, not only will I write more stories of his life and struggle, I’m going to expand my musings by writing more about peace, family and all of the good things in life; a kind of potpourri of perspectives that have come because of little Mitch. Some stories will be funny, others will be filled with textures of peace and love.

Today I feel an overwhelming sense of peace and gratitude, and I have my Father to thank for that. When I look at this photo of Mitch, one warm summer day, I feel a deep sense of joy because he was happy. 

This journey has been the hardest experience of my life, but also the most fulfilling. If I had my way in life, being human, I would have avoided pain at all cost. After all, I am human. Yet, in avoiding everything that hurts, I would have ignored the part of me you cannot see … the thing that makes me, me. For comfort, I would have forfeit the opportunity to struggle and grow. That is something my Father knows. I have learned that because of my pain, I have changed. And I think that change is good. 

I am grateful to be happy. I am grateful to be human. I am grateful for this little boy, no matter the cost.
 

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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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Mitchell’s grandfather has always had a gentle, quiet wisdom about him. My father died years ago and I never really had a template to pattern my life after – so I learned to watch. To this day, I watch everyone carefully and take quiet, deep notes. Sometimes I write my notes in pencil, other times I write in pen. This was a day I wrote in pen.

On this occasion, my in-laws came to our family’s ranch in Southern Utah, which aside from our home, was one of Mitchell’s favorite places to be. Mitch was excited to show his grandfather around the ranch on some 4-wheelers. Grandpa asked Mitch to take the lead, and that he would follow. Mitch smiled as he mounted his little 4-wheeler and carefully scootered about. He felt responsible and empowered – and little Mitch grew because of it. I saw a look of leadership in my son’s countenance that day and my heart swelled with love and gratitude. 

To me, this image is a symbol of good parenting, and I have my father-in-law to thank for the reminder.

In the past, I often observed my father-in-law present his grandchildren 2 or 3 options and invite them to make a choice. I don’t know if it is intentional, but he does it often, so I am sure it must be. Over the years I captured several such moments where Dee would ask little Mitch what he wanted to do … and my son would furrow his brow, think deeply and then decide on a thing. What my father-in-law was doing was teaching my son to think for himself and learn to have confidence in his decisions. 

Without realizing it, Natalie has often modeled her parenting style after her mother and father. Like her dad, she nurtured a sense of empowerment in our children. She would often say to our kids things like, “You can always make a choice, but you cannot choose the consequence,” warning them to think carefully before they act. Natalie often took the slower, but more effective method of parenting; always offering loving guidance, but allowing the natural consequences to follow, for better or worse. She did this so they would learn while they were young how much their choices mattered. She gave our kids options, so they could learn wisdom through trial and error and to eventually become confident in themselves. Surely there have been scraped knees and bruised egos, and sometimes things didn’t turn out how we hoped but, on balance, allowing our children to lead and make choices has helped them grow. 

So, when I look back on this beautiful summer morning when Mitch felt like the king of the world, I am reminded of the importance of raising children to feel empowered, not entitled. I’m reminded of the tremendous growth that happens when we take the time to teach our kids, then allow them to lead. 

My little son is leading me now, from a distant place far from view. I am watching and listening … and writing with pen.