Sweet boy, tomorrow we run in memory of you and in hope for others.
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“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.
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Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.
“I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. ”
For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him.
I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.
And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.
Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.
I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.
Thirty minutes later, he was gone. I know he heard me. I know it.
The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.
Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me.
So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.
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Mitch was home on hospice when we heard a soft tap on our front door. It was Carter, one of Mitchell’s best friends accompanied by his loving mother, also a dear friend to our family. In his arms was a valentines box he carefully made at school filled with all manner of treats kids love to eat. The kids at school had just done their candy exchange and not even Carter knew what yummy treats were in his box. I remember how much I treasured those things as a kid – and I saw that same look of treasurement in Carter’s eyes.
We escorted this young boy downstairs where Mitch was playing a game. Carter knelt down and opened his box of sweet treasures for the first time. Before even looking at what was inside Carter said, “Mitch, take whatever you want.”
Mitch was shy and looked through his box of candies. Carter’s quiet smile was magnanimous. My eyes filled with tears as I witnessed two giant souls clothed in the small bodies of young children. I saw my son who was fighting for life and his dear friend giving Mitchell’s life a little joy and happiness. Whatever Carter lost in sweet candies that day, he made up for in sweeter memories – which last longer and taste sweeter than anything I know.
A few years ago I wanted to travel the earth to explore the world’s wonders. I realized in this moment the world’s greatest wonders were already before me. They weren’t marked by vast canyons, lush terrains or majestic waters. Instead, the world’s greatest wonders wore small, worn-out shoes. They had grass-stained knees, played with plastic toys and built cities with their young imaginations. They laughed and played and sometimes tried their parent's patience ... but in the end, they wanted nothing more than to make their parents happy. The world’s greatest wonders were children. I always knew this – but at this moment I knew it a little more than the times before.
A few weeks later Carter would visit Mitch again … but this time at his funeral, sobbing in ways only a young child can know. His sweet smile was exchanged with deep, childhood grief. My heart went out to Carter and I was pained he had to experience such grief. I knelt down, swallowing my own sorrows, and gave Carter a father-like hug and thanked him for being such a dear friend to my son. I told him, “Because of you, his life was blessed.”
I have had many people ask me how I’ve learned to cope with grief. My answer is that I’m really no different than anyone who grieves – and that I still have moments, sometimes agonizing hours where the gravity of grief is so great death would be a sweet release. It is a terrible burden. At the same time it is also a paradoxical blessing – for those same burdens that brought me to my knees, bruised in sorrow, have also lifted my heart and mind heavenward.
In my loss I have gained new perspective and a deeper relationship with my own Father. He is eternally kind and patient with me as I stumble in my own ways. If I could just learn to be like these young boys …
One thing I have discovered about grief and learning to live again is that if I can set aside my own sorrows to lift and love another, just like Carter did in this photo, then my broken heart heals a little. At least to me, a key to grieving well is learning to give.
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