Sweet boy, tomorrow we run in memory of you and in hope for others.
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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.
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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.
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The warmth of the evening sun wrapped our bodies like a thick quilt. Tiny Mitch stumbled to the ground, scraped his knee badly and it began to bleed. Immediately he picked himself up from the sidewalk and ran to his mother’s arms for comfort. Mitch had just been diagnosed with DMD and suddenly all of his trips, stumbles and spills began to make sense. His little legs, although they looked healthy, were already demonstrating signs of catastrophic muscle wasting.
I’ll never forget how tiny Mitch snuggled into his mother’s arms, holding his baby Nerf football. He cried little and wished he didn’t hurt. Mitchie just wanted to run and play with the strength of healthy kids – but hard falls and bruised knees were what he came to know all-too-well. My angelic wife held our baby boy with love in her arms and healing in her wings. She couldn’t take the scrapes and bruises away, but she could carry his heartache and wipe his little tears – and that seemed to make everything okay again. Euripides was on to something when he said, “Oh, what a power is motherhood …” , for I have seen the nurturing power of motherhood with my own eyes.
I remember taking this photo and falling in love with this moment; not because my son was hurt but because love was made visible. It was brighter than the evening sun and warmed my soul from the inside out.
Natalie has always had a quiet dignity about her and never shared her love to get attention or accolades. Instead, she has lived a life of hushed service and deep love for others. Wherever she goes her love is made visible – not from dancing and prancing across the stage of life, but in quietly lifting people from dark corners and loving those who feel faceless, lost in a crowd of people. She has always served people in that way and it is as natural to her as breathing is to me.
So, when Mitch was on the edge of death, scared and wanting so much to live, I saw my angelic wife comfort our son in this same way; wings stretched wide and arms filled with love. She sat quietly at his bedside, holding his hand and whispering words of comfort as he slowly slipped away. Something deep within me tells me Mitch experienced that same comfort from his mother’s love as he did on this warm summer day. She couldn’t heal his fluttering heart, but she could stand beside him and wipe his tears and assure him everything would be okay – even though she knew she wouldn’t be okay. That is the power of motherhood.
When I think back on life’s most profound and healing moments, love has always been present. Love has always been visible. In ways I never imagined, I’ve discovered if I love and serve others, the shadows of grief are kept small. If I withhold the light of love, the shadows overtake me and I get lost in grief.
Natalie and little Mitch showed me what it means to have their love made visible. They showed me that it isn’t enough to think or feel love … but we must show it in our every word and deed; and when the light of our love is made visible, we begin to heal at great speed.
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