“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.
When Mitch was a tiny baby he knew just how to make me smile. In those early years I remember driving to the intersection where Natalie served as a crossing guard, surprising them with a quick hello. Baby Mitch sat in his car seat content with life and just glad to be alive. Natalie, his faithful mommy, would read books to him as they waited for children to cross the road. Mitchell always seemed excited to see me, but I was even more excited to see him. I'd jump in their car and we'd just talk. Mitch would look at me and smile - and that always seemed to turn a good day into a great day.
This morning as I thought of him, he did it again; I felt his smile in my soul. Today is going to be a great day.
“I was grateful for this gentle reminder tonight. That life is worth the struggle and internal fight - for it’s in the struggle we find the meaning of life.”
I am just wrapping up a week in north east Canada where it is bitter cold yet beautiful. This evening, I began a long drive back to a small airport that will soon take me to Toronto, then ultimately back home. At one point I looked out the window and saw a most beautiful sunset and took this photo. Instantly I thought of Mitch - or better said, I instantly became aware I was already thinking of Mitch.
It was the kind of sunset where he would have tugged at my arm softly and pointed, "Look Dad, isn't it beautiful?" In my heart I whispered, "Yes, son. But not as beautiful as you."
Earlier this morning a large winter storm was headed our way and the RCMP had blocked off the roads. There was no getting in or out of town and no way of knowing when we'd be able to leave. I wondered if I would make it out in time for my flight.
So, against the backdrop of a severe winter storm, I didn't expect to see the sun this evening. In many ways, that is how I felt when the storms of grief were especially new to me; I didn't expect to see the sun for a long, long time. In both cases, I am grateful to have seen the sun.
In just a few short days from now my little family will recognize the 3rd anniversary of my son's passing. Three years. To some who sit comfortably on the outside of grief, three years may seem like a long time ... time enough to "get over it" or "move on." They who think such thoughts are wronger than wrong. To those who live with grief, 3 years is but a blink.
Three years into this new journey and grief is still very real. But so is healing.
Early on, I didn't expect to see the sun. I felt darkness would last a million years and one. But that was not so - for I have since felt my love and hope grow.
I was grateful for this gentle reminder tonight. That life is worth the struggle and internal fight - for it's in the struggle we find the meaning of life.
“At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection.”
Parenthood has become the most difficult yet rewarding experience of my life. I wish I could say I did it perfectly, but I didn’t … and I don’t. Nobody really does, I suppose. Anymore, I don’t try to be the perfect parent … I just try to be loving and kind … to be the father and mentor I wish I had growing up. It is difficult at times, because I don’t know what to emulate – so I just try to be what I never had.
At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection.
When Mitch came home with a drawing or school assignment, I was always so proud of how hard he tried. I would hug him and kiss his face and tell him, “Great job, son. I’m so proud of you. Keep trying and you’ll better and better.” Always, there were imperfections in his drawings … but for him, he did it perfectly. Perfection is a relative term, for he was a young child and did the work of a young child. I didn’t care about flawless execution … at his age, I wanted him to be recognized for doing a little better than the time before. I wanted him to believe in himself and be proud of his accomplishments. As far as I can tell, belief-in-self is the bedrock of education and the scaffolding of character. At the same time, I am a strong believer in providing corrective feedback so that we might know where to stretch ourselves the next time. But, always, offering my children earned praise is high on my list of to-do’s as a father.
On this occasion my neighbor and friend, Jeff Winegar, offered to take our family to Snowbird so Mitch could participate in an adaptive sports program for kids with disabilities. Mitch was nervous about it because he knew he wasn’t very strong and that what little strength he did have would dissipate quickly. “What if I fall, Dad?” Mitch would ask me nervously. I assured him he wouldn’t be required to do anything for which he didn’t have the strength and that they had something special for him – so that he would be safe and have fun. Mitch sat in a small carriage attached to two skis. Behind him were two purple tethers which allowed an adult to ski behind Mitch and control his speed down the mountain. All Mitch needed to do was to lean right or left as he decided where he wanted to ski down the mountainside.
I asked my friend Jeff to be on tether while I skied backward to take a million photos of my son. I loved looking at Mitchell’s expressions of glee as the cold wind rushed against his rose-colored cheeks. At first, I saw an expression that seemed to say, “This isn’t so bad. I’m not scared anymore.” Then later, his face seemed to say, “I’ve got this! I can do it!” I was so proud of Mitch and overwhelmed with gratitude as I saw my son’s countenance filled with a new form of self-confidence. He couldn’t race down the mountain like an Olympian, nor was he required to, but he could bravely face the steep slopes and do what he could, with the heart of an Olympian. That is winning, too.
I remember kneeling in prayer that night thanking my Father for giving my son such a great experience. I also thanked Him for giving me the blessing of children - a gift for which I'm eternally grateful. Because of Mitch, each day I try to grow a little on the inside, just like he tried. If I color a little outside the lines, I recognize it and try to do better next time.
Maybe that’s the point of it all … to get better a little on the inside each time. Musicians do it, athletes do it, academics do it … nobody achieves greatness in an instant … but through getting a little better each time. And those who have mastered their craft will each say it comes from within. It always comes from within. Each day. A little on the inside.