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“I’m convinced the only label that should be applied to people is, “Handle with Care.” For we’re all sons and daughters of somebody ... loved beyond compare. After all, without love, what else is there? I’ll tell you: a life filled with shiny things, yet empty and bare.”

— Christopher M. Jones | Mitchell's Journey

Mitch sat quietly on the edge of his bed as his mother carefully opened care packages from all across the world. His little heart was weary and about to fail; so we learned to appreciate not just moments, but the moments between moments. Every second counted. Time was worth more than all the riches of earth … for soon this little boy would leave our home on a journey from which he would never return. Soon our hearts would break in ways we couldn’t imagine.

We no longer had heart monitors, respiratory readings, blood oxygen reports and the million other hospital things that reminded us he was dying. Instead, we had our little boy back. He was home. For a short time, we enjoyed the illusion everything was okay. But things were not okay. Not one bit.

Young Mitch was always touched by care packages from others; many of which bore labels on them, “Handle with Care.” It was such a tender time for our son and those words “Handle with Care” always seemed to soothe my troubled soul. Yet my son’s countenance bore a heavy burden – for I could see he knew his time was limited – which made every act of caring more special to him.

Elementary school teachers from far-off places, hearing of our son’s fate, had their classes write notes to Mitch with loving words of encouragement. Other young children taped quarters, nickels and dimes to paper and wrote with their tender hands, “Hi Mitch, here is my allowance. I hope it helps.” I wept every time I saw such letters to Mitch and I prayed that those little souls, and their caring families, would be blessed 100-fold for their kindness.

Young Mitch was confused that people he didn’t know would care so much about him. He would read letters from others and say with shallow breaths, “They are so nice to me.” 

While Mitch slept, I would kneel outside his door and thank my Father for the tender mercies in our life. I knew we would not be spared from sorrow [no one ever is], so I learned to be grateful for the comforts that were found in our sorrows.

One man from New Jersey sent Mitch a Halo book which arrived the night he passed away. When we opened the package and told Mitch what it was, he squeezed his mother’s hand as if he wanted to wake up and see it. Oh, how he wanted to see it. His profusion was so low he was unable to open his eyes or sit up – but he could signal us, and that broke our hearts. For inside his broken little body was a spirit of a little boy who was very much alive and wanting to enjoy all the world had to offer. 

Handle with care. I can’t get those words out of my soul, and I don’t want to. I saw what it did for my son and what it did to my family - and I am forever grateful for the loving kindness of others. I will spend the rest of my life paying it forward. 

I’m convinced the only label that should be applied to people is, "Handle with Care." For we're all sons and daughters of somebody ... loved beyond compare. After all, without love, what else is there? I'll tell you: a life filled with shiny things, yet empty and bare.

Perhaps that's what little Mitch has left behind ... messages of love that he wants me to find. 

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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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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.
 

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“Hey little Mitch,” I said with a soft voice, pointing to the inside of a book. “Will you put your arm here so I can trace it?” Mitch looked at me with a soft but curious expression, “Okay, Daddy.” Mitch flopped his tiny arm on the book and said, “Huwwy, Dad. I have to play wiff fwends.” 

Fighting back my tears, I carefully traced his little arm and even smaller hand. Anxious to go outside and play in the summer sun, Mitch didn’t know this book told a terrible tale about what he would one day experience. He only knew his mommy and daddy loved him and that they would always keep him safe. Mitch, like many young children, worried about monsters hiding in closets or under beds. I worried about the monster hiding inside his body. A monster so frightful and mean, all the science and medicine on earth could not stop it. 

When I was done tracing his chubby little hand I kissed Mitch and said, “Daddy loves you.” With that, my little boy dashed away without a care in the world. Inside, I felt like I had the weight of the world on my shoulders.

For nights-on-end, I sat weeping at my kitchen table as I read this book … a book which, at once, read like a medical text and a horror novel. Though slightly dated, this was the only content I could find at the time that was unflinching in its description of DMD and offered candid advice on how to cope with the harsh realities of muscle wasting. I cried, and I cried. And when I felt pulverized by sorrow, convinced there were no more tears, grief found deeper reservoirs of the soul, and I cried some more.

It wasn’t until my son died less than eight years later that I discovered there is no end to tears. For if there is no end to love, there is no end to grief. At least while I’m mortal.

I believe one day grief will change. Not today. Not in 50 years. As long as I’m mortal, I will grieve over the loss of this little boy I love so much. Grief is a heavy burden of the soul. With each day I carry the weight of grief, I feel myself getting stronger. With each fallen tear, I am learning a deeper compassion for others who hurt. With every heartfelt prayer for relief and understanding, I draw closer to my Father. I know He is there, and I know He cares. I believe He wants us to be strong as well as good – and that is partly why we suffer. I am not strong, and I don’t think I’m very good … but I’m trying. I will never stop trying.

I found this book the other day as I was preparing for a Mitchell’s Journey presentation at a medical school. I had long forgotten I traced Mitchell’s tender hand so many years ago. When I opened the book my heart fell to the floor. I cried that moment like I cried way back then. Only my tears were from loss, not the anticipation of it.

This little hand is evidence my son lived. Though he is gone now, the memory of Mitch lives in my soul, and I cannot get him out of my mind. I am grateful that his memory isn’t a source of agony anymore – but instead a source of deep love and joy, and yes, still pain. Because of Mitch, I have gained a deeper appreciation for life, family, and love. I have learned what it means to be a father and a son. Though imperfect and flawed, each day I try to be a better one.