“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.
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.
When Mitch was tiny, he would sit in the back of a trailer attached to a 4-wheeler while his uncle drove short distances at a quick speed. Mitchell’s chubby little fingers gripped tightly the side of the trailer as he screamed and laughed like a baby pirate in pursuit of childhood treasures. Laura-Ashley and Ethan sat beside him and giggled at how fearless their little brother seemed.
Afterward, I would show Mitch the photos I took and he would say, “Dat made my tummy gig-go.” I would burst out in love-filled laughter, then hug and kiss his cheek. To this day, I can almost feel his little arms around my neck as I hugged him.
As he grew older, Mitch loved rollercoasters. He was fearless and enjoyed the rush and thrill of any ride – no matter how big and scary it may have seemed to an adult. During his last few years, I would have to reach over and hold his head steady on rollercoasters because his neck muscles were getting weaker. Sometimes while Mitch was laughing on a ride I would find myself crying; the combination of tears and the rushing wind blinded me from seeing my son’s smile. I cried because I knew everything my son enjoyed was coming to an end; not through death per se, but because DMD was destroying his muscles and I knew there would come a time he wouldn’t have the strength to lift his head from a pillow. A bitter irony for a little boy who drank life in by the goblet and spared no opportunity for adventure.
When I look back at this time with tiny Mitch, and the million-and-one other times just like this, my heart overflows with gratitude. Yes, heartache happened, but so did indescribable joy and fulfillment. Hurt is the eventual price we pay for love – whether we love a parent, sibling, child or pet … one day, we will lose all of them to time, circumstance and death. But that hurt is a small price to pay for a shot at love. I wouldn’t trade all the hollow pleasures and treasures of earth for this kind of love. It simply doesn’t compare.
This little boy happened … and with him came a hurt I never imagined, not even in my darkest nightmares. But so also came a love and joy I never supposed, not even in my most heavenly dreams.
This happened, the good and bad, and I am better for it. I thank my Father every single day on bended knee; for I know love and sorrow, and now I see.
I am posting a few other photos from this series on Instagram:
instagram.com/mitchells_journey
I think that nightmare scenario crosses every parent’s mind at one point or another and we ask ourselves: “What would I do if I lost my child?” In every way that matters, we are asking ourselves what would happen if we lost part of ourselves – for that is what our children are to us. That’s what our children will never understand until they have children of their own: they become more important to us than we are to ourselves.
Just after we were told Mitch had days to live, Natalie’s mother and father came rushing to the hospital to offer love and support. Over the next few weeks, my wife and I would keep the knowledge of our son’s impending death from Mitch. Peace of mind and childhood was our gift to our son – at least for a little while. You see, we didn’t know if he was going to die in an hour, or a day, or in a month and we wanted to help Mitch make the most of what time remained.
“I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.”
Palliative care workers circled our room and visited daily asking for permission to talk to Mitch about his death. Each time we told them no. Knowing our time with Mitch was short weighed heavy on our souls. We hid our broken hearts behind a soft smile and we put away our dashed hopes and shattered dreams under a blanket of hugs and loves. Though we didn’t know how to protect him from death, we could protect him from worry and fear. And that is what we tried to do. That was all we knew to do.
When these good parents arrived, Natalie and her father found an empty room in the cardiac intensive care unit. A curtain was drawn and a tender conversation between a daddy and his little girl ensued. Tears of deep grief and anguish fell to the earth. I wonder if the heavens wept just a little that day – not out of sorrow, but empathy. I don’t know what they talked about. I only know that empty room became hallowed ground between a good father and his little daughter.
I stayed with Mitch and his grandmother in his CICU room. My mother-in-law is as good a woman as there ever was. Her heart was broken for Mitch and her daughter and our family. I’ll write of her another day.
After some time had passed Mitch asked me to get Natalie. When I went to get her I stumbled into a most tender and beautiful scene. I saw a good father embrace his daughter as she wept. In her trembling hand was a pamphlet about how to talk to your child about death and dying. That impossible scenario we couldn’t imagine living suddenly became a harsh reality.
When I saw my wife and her good father I sensed something similar between our Father. I thought of those times I knelt by my bed with bruised knees pleading for a way out for my son; the nights seemed to stretch out into infinity as I wet my pillow with tears. I felt the words in my heart, “I cannot take your troubles from you, but I will walk with you and lift you when you fall.”
Somewhere out there lives my son. And when I see him next I will drop everything and I will run … boy, will I ever run. The heavens will weep once more – but this time out of joy – for a family will be reunited with their young, fallen boy.
When I think of my own children, two of whom are teenagers and my youngest now ten, I know that I cannot take their troubles away. But, like this good father I will walk beside them … even with bare feet and broken bones. Until my dying breath, I will walk beside them and try to lead them home.