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.
It was mid-September 2005. The weather was so warm I thought summer would never end. The mountain trees, however, told a different story. The lush green forest was slowly turning orange and red, reminding us change was coming and that the face of the mountain would soon lose its blush, ushering winter into the valley.
It was a stressful time in my life. I had just learned my son had a terminal disease and at the same time I was struggling to make a new business venture work. There were client demands to meet, payroll, taxes and a million-and-one things that weighed heavy on my mind. Though Mitch was my 3rd child, in many ways I felt like a child myself. An imposter, of sorts. Although I could do a professional thing or two, I felt a bit like a child clothed in a man’s body, still trying to figure out who I was and discovering my place in the world. I was growing up. But growing can be painful and unsetteling.
I was no knight in shining armor. Instead, I was a flawed man in tattered cloth … but my wife loved me anyway. I was unsure of myself and full of worry – yet my clients believed in me. I was a boy trying to become a father, yet I stumbled to be the dad my children deserved. My kids didn’t notice my imperfections like I did, they just loved me for being me. It seemed that the world was kinder to me than I deserved – and for that I was grateful.
So, after a long day at the office, I set out to meet Natalie and the kids at a nearby park. When Mitch saw me, he ran as fast as his tiny legs could take him and jumped into my arms. I couldn’t get enough of this little boy and my other children.
I asked tiny Mitch how his day went. He smiled in his shy way and said, “It wuz good.” He paused a moment and then corrected himself, “No, it was gwate.” I chuckled and kissed his little neck then said, “I love you, Mitch.” He then went on to tell me what he learned from Miss Nancy, his pre-school teacher. “She nice to me,” he said with a glimmer of confidence in his eyes. I could tell Mitch felt safe and cared for – and that did my troubled heart good. Tiny Mitch, with his sweet expressions, calmed my weary soul. Though winter and other cold realities were heading our way, I was grateful for the warmth I felt that day.
Having children was a strange thing for me - for they taught me to love deeply and unconditionally. To my surprise, I needed them as much as they needed me. Such is the wonder of family.
I am grateful for my kids, for they remind me of the person I want to be.