“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.
The year after Mitch passed away my aunt and mother came to visit our home. We love having visitors – and enjoying their company that day was a treat. In many ways, my aunt is like a second mother to me and I love her dearly. She is currently in the final stage of her battle with cancer. I pray for her every single night and count myself blessed to be part of her family.
When I was much younger I remember my aunt visiting our home. At one point we started playing some word game around the kitchen table; a moment that I treasure to this day. It wasn’t long ago she shared her memory of that night some 27 years ago … when I conjured up a funny definition to a word. While playing the game, she presented an obscure word for which I then had to come up with a definition. I didn’t know what the word meant so I said “the irresistible urge to saddle a horse.” My family comes from strong cowboy stock, so she laughed and laughed at my silly definition. When she reminded me of that moment we both laughed again, all these years later.
It’s the little things. It’s always the little things.
So on this beautiful spring afternoon their visit may have seemed little to them, but it was big to me. I was at an especially tender time in my life – learning to live without my son – and their company and smiles seemed to lighten the weight of grief. How I needed that relief.
My heart was full that day – because I was able to reflect on some good moments from a time long gone. I also gained a deeper appreciation for all that I had in the moment.
As my mother and aunt began to walk down my driveway, I took a photo of these two beautiful souls, sisters joined in arms. As they carefully made their descent my mind flooded with memories of Mitch on this same slope. In my mind, I could almost see visions of Mitch laughing as he drove his scooter down at reckless speeds … or the snow blowing across the way as he slid down the snow-packed concrete.
One place, so many memories … and here, for good measure, was yet another memory to keep and treasure.
Raising little Mitch taught me that if I look for beauty, I will find it. Well, I found something beautiful that day and my heart was overflowing with love and gratitude for these two good souls who helped shape me in their own special ways.
Today I will look for beauty. When I find beauty my grief turns into gratitude … and that is a good thing.
I remember doing an audio interview with Mitch when he said, "Well, at least I have today." I loved that. I wrote it in my journal and I wrote it in my soul. I vowed from that moment on to always be grateful for today.
So, in keeping with Mitchell's words, I was grateful for today. It has been a day of love and reflection, peace, and mourning. Above all, this has been a day of gratitude.
My friend, Darrell Robinson, who helps me manage our Miles for Mitchell page, posted the following quote and invited those who follow that page to try to meet one of its challenges, in honor of Mitch.
I loved these words so much, I wanted to share them here. If ever there were a philosophy my son taught me, it is this. I pray to always be grateful for today and try to live by the following:
"... mend a quarrel. Seek out a forgotten friend.
Dismiss suspicion and replace it with trust.
Write a letter. Give a soft answer.
Encourage youth.
Manifest your loyalty in word and deed.
Keep a promise. Forgo a grudge.
Forgive an enemy. Apologize. Try to understand.
Examine your demands on others. Think first of someone else.
Be kind. Be gentle. Laugh a little more.
Express your gratitude.
Welcome a stranger.
Gladden the heart of a child.
Take pleasure in the beauty and wonder of the earth.
Speak your love, and then speak it again."
-Howard Hunter
Mitch was home on hospice for a few days and was anxious to play a new video game that had just been released. We wanted him to enjoy what little time he had left, so we paved the way for him to play. The thunder of crashing sounds and music filled the air. Mitch was audibly in awe of the game’s graphics and I could hear him down the hall saying, “Oooooh, that is so cool!”
Suddenly there was silence.
“Oh … no. Not now. Please, not now.” I cried inside.
Panicked, I ran down the hall with the speed of an Olympian to see if Mitch was okay – after all, his cardiologist said he was at risk of instant death. He was sitting strangely quiet on the couch when I said in a worried tone, “Mitch, are you okay?”
Mitch smiled softly and whispered, looking toward his hand, “Dad, look.” I then saw baby Marlie who had rested her head softly on his hand and began to sleep. Mitch didn’t move a muscle.
In this very moment my heart burst with love and gratitude. I loved my son with all of my heart and was grateful he was entrusted to me. I loved this puppy for what she did for my dying boy’s heart and soul. I loved my father-in-law for becoming an instrument of love and mercy – for finding this puppy for my sick child before he passed away. And most of all, I loved my Father for the many tender mercies that were in my life – however undeserving I may have been.
Though we were hurting deeply, we were also being helped by an influence unseen – and that is no small thing. Yes, Mitchell’s Journey is a story of love for a sick child … but it is also a story of Heavenly love. Somewhere in all my heartbreak, deep in the shadows of sorrow, I have discovered that Heavenly love anew.
I lost track of the many winter nights when I wept and pled for my son – that somehow Heaven would make things right. Eventually an insight, like a flash of light, broke through; “Be patient, my child, death is not the end, and there is something I want you to learn about you.”
Slowly time passed – and I found myself in agony over moments lost. Days turned into weeks and months turned into years. Over time I have learned to walk again and see far past my tears.
It’s microscopic moments like this, between a baby dog and a sick little Mitch, that change the way I see. Instead of focusing on grief and hardship I’ve learned to appreciate our many, many tender mercies. If we’re not watchful, we could complain about the pain and sorrow all day – blinded by grief, unaware of the blessings and heavenly helps along the way.
I look for microscopic moments to be grateful, because they all add up. And before I know it, those little blessings fill my empty cup.