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.
“Oh, little child, how I watched you while you slept. So sweet and soft … it was my heart that you kept. Now you live in that place beyond the hills … on the far side of the sea … a place I hope to visit in the quiet of my dreams. ”
When I was a young child I remember being awoken by light emanating from the hallway as my parents opened my bedroom door to check on me. Sometimes they would quickly shut the door, afraid to wake me. Other times they lingered a moment and looked on as if to ponder. As far as I can remember, I always awoke when they checked on me but pretended to be sleeping.
I remember wondering why my parents did such a strange thing. After I became a father I finally started to understand. When my children were infants, my wife and I would gush and fawn over the crib as we saw our tiny baby breathe so softly. “What miracle is this?” I would think to myself, humbled at the beauty of life and family. As they grew from toddler to child, that tradition of looking at our sweet children while they slept evolved; we would often giggle at how they passed out with toys in their hands or books on their faces. I have a photo of Laura-Ashely passed out at the top of our staircase, face smashed against the carpet. I still giggle when I look at that photo.
We loved to look at our children while they slept because they were our creation and in every way that matters, they had become an extension of our heart and soul. As exhausting as parenting can be, I have discovered a certain renewal happens when we know they are safe at home.
After Mitch was diagnosed with Duchene Muscular Dystrophy, I found myself almost nightly kneeling at his bedside as he slept, pleading to my Father for my son’s well-being. My tradition of checking on my children turned into a nightly, tear-drenched ritual of prayer and pleading to my Father … for I knew that I, too, was a child who was loved and hoped that He might hear my trembling words. I pleaded for a miracle, that I might trade places with my son, and that somehow I might suffer for him. If only my son knew how often I poured out my heart and soul heavenward while he slept. If only he knew how oft I watched over him at night and begged that this bitter cup might pass under the canopy of a dim starry light.
In this photo Mitch was home on hospice, unaware his days were numbered. He asked me to tuck him in, so I decided to cuddle with him for a bit. We talked for a while. He told me about a fort he made in Minecraft and he wanted to show it to me, I smiled and told him I couldn’t wait. I told him I loved him 100 times that night and that I was so proud of him. He would smile and say, “I wuv you too, Dad.”
Soon I began to drift to sleep – I wasn’t sleeping much and I was so very tired. At some point Natalie came to check on us and she took this photo with her phone. Little Mitch was still awake, cuddled under my arm. Only this time he was watching me while I slept. I wonder what he was thinking. More importantly, I hope he felt loved. Though he sensed mortal danger was near, I hope he felt a little safer in the clasp of my arms. I hope.
Oh, little child, how I watched you while you slept. So sweet and soft … it was my heart that you kept. Now you live in that place beyond the hills … on the far side of the sea … a place I hope to visit in the quiet of my dreams. And if Heaven will be so kind, my heart will open up and you will read what’s on my mind. You will know that I would have fallen for you, if I had the opportunity … it is true. I fought to save your life, you see. But then I realized it was you who was saving me. I am different now. At least I hope to be. One of Heaven’s strange ironies.
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.
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.