“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.
I remember the muffled whispers from these two young boys as they negotiated an imaginary scene. Little Mitch and Ethan were hard at work making a movie in their minds. Their dimpled hands moved little toy figures from one place to another over an ever-changing landscape of cloth and couch pillows.
The child in my heart wanted to join them in the action – but I knew this was their time to bond, so I refrained and just watched these sweet boys from a distance do what they do best: imagine. “Petcheew, petcheew”, Ethan sounded with great energy. Mitch replied, “Aaaaahhhhh” as his chubby fingers escorted a little Star Wars figure from the air into a carpety ocean. Their imaginary tale continued for another 20 minutes. Quietly I sat with a smile on my face and an even bigger smile in my heart. I didn’t just see two little boys playing … I saw how much they loved each other and that filled my heart with the deepest joy.
Every single day these little boys created a storybook of adventure. Each page written moment-by-moment, sometimes with great brilliance. Furniture turned into vast mountain ranges, carpet into deep valleys. Our little home became an infinite universe of endless wonders.
Sometimes I wish I invested more energy in playing with my children when they were young. I tried, but looking back, I could have done better. I should have done better. But I suppose that is the lament of every parent. Maybe that is why grandparents are so great at what they do … because they finally learned that nothing is more important than the time we spend with family. They are less concerned with accumulating things and seem to be more interested in making moments – because by comparison, they don’t have many moments left.
Several years ago, about two years before Mitch was diagnosed with DMD, I sat at the kitchen table of a woman whom I just met. I had flown to Arizona to document some of her life story. Her name is Anita Farnsworth. A more lovely and kind person I have never met. I consider her a dear friend to this day.
She described in a most beautiful way her love of family. She has 14 children and more grand & great grandchildren than I can count. If I were to tell you the number, you might think I exaggerate. I carefully placed a microphone on her kitchen table and asked her to just talk to me. Soon I was swept away with her story as images from her words flooded my mind.
I asked her what it meant to be a mother. She said her first delivery was very difficult … and just after her delivery someone asked if she was going to have another, she said, “I don’t know why anyone would have more than one.” With a chuckle in her voice and a glowing smile on her face, she then said with tears in her eyes, “But then, I forgot about all of that. Why cut yourself short on blessings. [With children] there is so much love.” By the end of her beautiful characterization of motherhood, my eyes were overflowing with tears, overwhelmed by the truth of her words.
Imagine that … children are at once the most rewarding and challenging assignment in life. They are the source of great pain, worry and heartache … while at the same time they bring the richest joys and deepest fulfillment.
Sitting at that humble kitchen table was a woman who became a master teacher. I learned more about life in those few hours with her than I learned in all my years of university. About two years later, when she discovered Mitch was diagnosed with a fatal disease, she wrote me a most compassionate letter and offered her love and prayers. I was reminded of that time at her kitchen table when I felt so much love from her heart. I wept again … grateful for those who mourn with those that mourn. Grateful for those who have love in their hearts. I long for that day when the world lays down its weapons of war, its rhetoric of hate and shame and trades those cruel tools for more powerful agents of change. Love.
Imagine that …
Our first book is almost ready. I haven't settled on a title yet, but the story centers around Mitchell and his puppy and what happens when we give.
I hope to have the first edition at this year's #milesformitchell run on April 23rd. I'm also wrapping up a book [not intended for children] that is a candid, chronological story of #mitchellsjourney- I hope to have it ready by mid-summer. This fall we should have a book of photos and essays ready to print.
This first children's book will be part of a larger series aimed at younger children. At the back of every book will be at least one essay and photo that was the origin of the story.
Hopefully, there'll be something for kids and adults.
The first edition will be limited because I want to get feedback from early readers about what worked and didn't work. I've never written a children's book before - so I have a lot to learn.
My hope is that when kids and adults read the stories they will try to implement something new and positive in their lives.