“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.
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.
A few weeks ago I took my sweet wife on a winter photo shoot. The night was bitter cold and the earth was covered in a fresh blanket of fluffy snow. Mitch would have been entranced by the quiet beauty of it all. I never go anywhere that I don’t take my little son with me in my mind and heart.
When we arrived at the secluded wood I handed my wife a lantern made of twigs I discovered several months prior. I then placed a light in the heart of the lamp. As Natalie began to walk through a darkened, wintry forest I shot what was in my mind and heart. It was a metaphor for something I was feeling and I had to get it out of me. Everything went as I had hoped.
We didn’t take long as it was cold and dark outside and we were anxious to be home with our children. Before we left I hung my lantern on the broken trunk of a fallen tree. The light from the lamp was warm and beautiful against the backdrop of a frigid, wintry night.
I thought deeply that evening about what it means to be alone in the dark; how we must often walk by the dim lamp of faith and hope as we journey through our own wilderness of hardship and struggle.
It is easy to talk of faith in the abstract, from a pulpit, citing other people’s words. But when life requires us to walk that dark mile, alone ... there is often a breathless silence. When it is our turn to truly suffer, and then take those first few steps into the pitch of night, faith takes on a different, more exacting meaning.
Surely we may have people around us cheering us on, offering love and support. But they cannot bear the burden of the sufferer. They don't know, nor can they know, the horrors of the sufferers heart. And when the night comes, when we lay down to sleep, that is when the unfiltered horrors of loss and sorrow are ours and ours alone. As I wrote in an earlier post, "After all is said and done, the journey of grief is traveled by one." In my experience, going to sleep or waking up was when I was most alone in the dark.
Yet during my darkest moments … when I felt I was drowning in a rising tide of grief and sorrow, I would have subtle impressions and feelings of peace that defied my own understanding and soothed my weary soul. They didn’t take away my sorrow; they only gave me a measure of understanding and just enough strength to carry on a little further.
I am no fanatic, but I believe that when this life is behind us, we will look back on our mortal moments of darkness and realize we were never truly alone in the dark … but that we were surrounded by beings of light we cannot yet see. We will come to know what ancient Elisha knew, “they that be with us” are far more than we realize. And were our eyes truly opened, we would see the mountains we once thought barren were in fact full. Helping us. Soothing us. Offering help and direction.
Ralph Waldo Emerson once observed, “Though we travel the world over to find the beautiful, we must carry it with us, or we find it not.” The same could be said of spiritual light. We must carry it with us, however dimly, or we will see it not.
It had only been a few short hours from the time little Mitch passed away. I felt like I had been thrown overboard into a vast sea of grief – how deep and violent that sea would become I never imagined. I had clung to a little raft of hope for so long – and in a moment, that hope for one more day … one more moment with my son was suddenly submerged in terrible waves of sorrow.
It was that realization he was gone (I mean really, really gone) that was terrifying. My soul experienced a new, darker form of grief as what little hope I had was dashed and absolute. Like wading in the ocean; one moment surrounded in warm water then suddenly the water went cold, then warm again … our emotions were no different. One moment we felt peace, the next moment unimaginable horror. The nightmare I was terrified to imagine became a suffocating reality.
My dear wife sat on the edge of our bed quietly weeping when my oldest sister came into our room and began to console her, mother-to-mother. This is the same sister who knew Natalie and I sat in the hall outside Mitchell’s bedroom and wept while he slept and brought us cushions to sit on just days earlier. I made mention in a post how hard the ground felt and this good woman offered the only relief she could.
As a father, the death of my son stripped me of everything. I was no longer the protector of my children but instead a helpless, terrified bystander to the implacable force of death. I loved my son and wanted to save him – but I failed. My wife and I were terrorized by feelings of doubt, frustrated that medical interventions presented themselves too late, and panicked by an endless list of “what if’s.” Although the morning sun had risen, night had scarcely begun.
Then entered my sister, an angel made mortal. Like heavenly wings of comfort, she wrapped her arms around my broken wife and wept with her. I wept at this very sight – grateful for compassionate souls. Today, when I look at this image of my sister mourning with my wife, my heart is softened and my soul soothed. I don’t know much, but I have come to know we are comforted, as if by a whisper, by those who have gone before us. Though they want for our happiness, they mourn with us … not out of pity or disappointment that we are sad, but empathy. They understand that we hurt and they hurt with us. Sorrow over loss is nothing to be ashamed of. It is an evidence of love. I can see Mitch holding my wife, sight unseen, whispering to her soul, “I know mommy, I miss you too. I am sorry that you hurt so much. I understand.”
I recently had lunch with a good man and colleague. He is an ecclesiastical leader and a man of great faith. He asked the question, “Why do some people really suffer by the loss of a loved one while others seem to accept it as a fact of life and mortality and move on?” I was a little surprised by his question and didn’t quite know how to answer it at the moment – I only said when my father passed away, that was hard. But when my young son died, it was life altering and soul shattering.
Grief is hard. It is the hardest thing I’ve ever experienced. Ever.
Sometimes grief comes barging into my heart at the most unexpected moments. I was on a business trip last Friday and everything went better than expected. I was excited about the future and my heart was filled with hope and anticipation. Then at about 10:30 PM, on the flight home, I dozed off. I began to dream of my dear son and somewhere between sleep and consciousness I realized Mitch was gone and my soul panicked. I awoke in a terror and my heart was pounding. I felt the pains of loss anew – with the same intensity as this very morning when I lost my son.
So, what is the point to all this suffering? The answer lives deep within - where secrets of the soul are ours to win. They do not come easy - in fact they often come at a cost ... sometimes at the hand of a terrible loss. But when we learn to look and see, our hearts will be healed by a most heavenly scene. Perhaps, after all, when we felt most alone, we were comforted by arms unseen and wings unknown.