"Dad, will you hold my hand?" Mitch asked softly. My heart melted as I reached down to grab his hand.
Mitch and I never simply held hands, we hugged hands. That simple exchange between us was both playful and deeply felt. Sometimes we had a contest to see who could give the biggest hand hug. Those are some of my favorite memories.
While holding hands, we often didn't say much. We didn't need to, for we had a conversation through our hands. All the love in our hearts was expressed by gentle squeezes that said, "I love you more than words can say."
I didn't want Mitch to go anywhere that he didn't know he was loved beyond words. I wanted him to know his mom and dad would catch him when he fell. Always. If I couldn't heal his body, I at least wanted to heal his worried soul, and I knew that love heals.
I miss that voiceless exchange; that unspoken love which was often felt more than heard. That's what children do: they show us a kind of love where words, at times, are inadequate. Even barren.
Although I was blessed to hold Mitchell's hand for a season, he now holds my heart forever. He was worth every piece of my broken heart. Even if I cried a million years, he would be worth every tear.
As Mitch lay on his bed, about to pass away, I know he felt me squeeze his hand like I used to. I know it because he squeezed mine back, only this time, his squeeze was weak, like a candle about to flicker out by the winds of change. I hope, when his tender heart was worried and afraid, that he felt my unspoken love. I hope his soul felt, in a most tender and loving way, "I love you more than words can say."
“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.
I just returned from a father-son trip with Ethan and Wyatt. We went to Bryce Canyon and the Escalante National Park to explore the outdoors and make memories. One thing I’ve discovered along my grief journey is I must make new memories if I’m to heal and grow.
On our first night, I took my boys to the edge of a tall ridge where we could see deep into the stone carved wonders of Bryce Canyon. As the sun cast its evening light across the sky, nature’s handiwork seemed to stretch out into infinity. Millions of years of erosion had left behind a most beautiful display of stone and color. At one point I asked my boys, “Wouldn’t it be neat if we could stand here in a bubble and watch 200 million years pass in a matter of minutes? What do you think we would see? How would the world change?” My boys seemed to think deeply over that question. So did I.
All the wondrous landscape at our feet was a testament that change and beauty take time. Sometimes I think grief is like the seasons. There are cold seasons and warm seasons and there are the times of change in between. With each season of grief, I am beginning to see a subtle erosion of the old and a beautifully unexpected shaping of the new.
The second night we drove deep into the woods to take photos of the stars. Before long the sky grew pitch black and the evening breeze calmed and became strangely still. Ethan and I peered heavenward and saw more stars then in a single gaze than I've ever seen at any one time in my life. The air was so cold it felt like we were marooned on a small rock floating in outer space – even the air seemed thin. Cute little Wyatt sat cozily in my truck with the heater roaring as if he were stationed in a life capsule waiting for us to return from our space exploration.
As we peered into the vast night sky, we felt infinitesimally small. In an instant the world, with all its sound and fury, seemed insignificant as compared to the mind-boggling vastness of space. I told Ethan that scientists believe there are roughly 70 billion trillion stars in space. We know so little of the universe – and the deeper we probe the more bizarre the universe seems. All of humanity are but infants, cradled in heaven’s lap. We know about as much about the universe as those old geographers who once thought the world was flat.
Ethan was sensitive to light pollution and wanted to make sure we were as far away from civilization as possible so that he might see deeper into space. Ethan knew that the darker the skies, the brighter the stars.
So, as we sat in the cold of night looking deeper into heaven than we ever imagined, Ethan and I contemplated the relative nothingness of mankind. It was a humbling moment. Often, when Ethan and I shoot the night sky, he wonders out loud about Mitch; he asks questions about where he is, what he might be doing, and he wonders if Mitch might be near us at times. I know Ethan misses his brother and that grief weighs heavy on his heart. So, I try to be a strong shoulder for him to lean on and a listening ear and understanding heart. If I cannot take his hurt away, I can at least hold him while he hurts. And, when the skies draw black, I hope he learns to get away from life pollution – so that his spiritual eyes might see heaven’s stars more clearly. Stars one cannot see in the light of day ... stars that will surely point the way.
I will never forget when Mitch sat at the bottom of our steps, struggling to catch his breath after playing one of his last Nerf gun battles. He said to me, “Dad, why can’t I be like a regular kid? I know I will not get better. I know I will die.” In that very moment, keeping my composure consumed what little strength I had left. I was a broken father, stumbling over pebbles and powerless to rescue my son. Still, I hid away a river of tears so that I might comfort my little boy and not frighten him. Though the prospect of losing Mitch frightened me deeply. “Mitch, my son, I don’t know why we have to do hard things. I only know that our Father loves us and that we are on this earth to learn and grow.”
I don’t know how much those words comforted my son in that moment of childhood grief – but I do know he thought deeply about life and death and what happens on the other side. As his father, I did my best to teach him – not to believe my words, but rather I tried to give him the tools so that he might learn for himself … so that he didn’t need to simply believe on my words, but that he might have a knowledge of things for himself. After all, that is the greatest gift we can give our kids … “Don’t believe me. Let me show you how to find out for yourself.” As he neared the end, Mitch came to know (in sacred and undeniable ways) there was more to life than what we saw with our mortal eyes.
So many of the experiences my tender wife and I had leading up to (and during) our son’s death are the kind of life traumas that you never get over. They are not the stuff of nightmares … they are the stuff beyond nightmares. I have discovered that you don't set it aside and move on. That is impossible. Instead, we have to learn to live with those memories and decide what meaning they have for us.
Though I often write of hard things in this place, I don’t live in a constant state of grief. I have grief moments, but thankfully they don’t last as long as they used to. In a manner of speaking, I no longer see a light at the end of the tunnel – for I believe I have passed through the tunnel. That doesn’t mean all is well and that things are as they used to be. I am forever changed over the loss of Mitch. I will miss him the remainder of my mortal days and I have learned to live with chronic grief.
At least for me, Mitchell's Journey is like cleaning a deep wound. It's not for everybody. What's more, because my wound is deep, I tend to go deep and it hurts a lot. But that deep cleanse is necessary so as to not allow sorrow to infect my soul.
As I continue down this path of reflection over my son’s journey, I don’t write to wallow. I write to examine. To think deeply. To discover the meaning of suffering and other things. I write because I don’t ever want to be that person who forgets the lesson. I think that’s a universal human struggle: to remember and to see clearly. For when pain passes, we tend to forget and go to what’s easy. Mitchell’s Journey, at least for me, is a place to remember and a place to see.
I write so that I might remember what I’ve learned at such a terrible price. I write lest I forget and become what I used to be. For where I was yesteryear is no place for me.