"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."
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.
“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.
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.