I was honored to be a guest on the Making Our Way podcast a few weeks ago. In this conversation, we discussed the hard stuff and the deep and meaningful stuff. I enjoyed talking with Marissa Penrod: a parent, activist, and friend.
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On his final day, Mitch slipped into a state of near unconsciousness. His body was motionless, his breathing soft as a feather and pillow stained with a feverish sweat; by stark contrast, the only sign of life was his heart pounding violently through his ribcage. Natalie placed her hand softly on his chest to comfort him. Occasionally, we’d get a soft hand squeeze from Mitch that signaled he could hear us. But Mitch was slipping through our fingers like a baby made of sand.
Although our hospice nurse told us what to expect over the next several hours, we discovered there is never any real way to prepare for the death of your child. Until that fateful moment, it’s all an abstraction. The deeper truth is there’s never a single moment you confront the totality of death. Instead, grief visits you each day as you learn to cope with layers of sorrow for years and years … and years.
My heart broke for my sweet son, surrounded by all his boyhood treasures. The bitter irony was Mitch looked to his future with youthful enthusiasm; what he thought was a beautiful sunrise on the horizon of his life was, in reality, a darkening sunset.
As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could.
This image was the moment I realized the sun in Mitchell’s life had disappeared behind the mountains – never to rise again.
Medicine failed us. Hospital bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last-minute interventions were too little, too late.
I suppose there are a million and one reasons I could be angry with people, medical systems, and God (or the Universe) for all that’s happened. But I am not. I am only grateful. I am grateful for what I did have, for I had a chance to love my little child for 10 incredible years. He became my friend, and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.
On my son’s journey through life and death, there were many times I cried out in my mind and heart, “Oh, this hurts. God, where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered if the night would ever end. I had never known a darkness so pitch, a grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles. My eyes, scared with tears.
Years later, I can say with confidence there is light on the other side of all that darkness. That’s not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me – and for that, I’m grateful.
The question I hear over and over from others is, “Why?” I’m not sure it’s possible to know why we experience what we do. If you’re a person of faith, whether we settle the question ‘Is God the author of our suffering?’ or not is immaterial. If our suffering is caused by other means … whether from our own poor judgment or the harmful choices of others or perhaps our suffering is simply a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.
Despite my heavenward pleas to spare my son, a little boy I loved with all my heart, I now find myself on the other side of death. What I do next with my harsh reality matters. I can shake my fist at the heavens or universe in anger – but that won’t change heaven or the universe. Not in the slightest. That kind of rage will only change me … and probably for the worse.
Instead, I’ve learned to take a knee and search for understanding and wisdom.
The trouble with suffering is we exhaust too much time and energy asking the one question that can’t be answered. Rather than wondering, “why me?” I learned I was better served by remembering, “What am I to learn from this?”
I believe life is meant to be hard because the evidence is all around us. I also believe that suffering can strengthen us in ways we cannot imagine in times of comfort and ease. The key for me was to transform my torment into my teacher. That transformation didn’t lighten my sorrows – it only gave it context, meaning, and purpose.
Losing my little boy reminded me that we do not take our earthly treasures to that place beyond the hills. We only take who we are and what we’ve become. That’s everything we keep when all is said and done.
I remember gently waking my daughter, who was deep asleep, to let her know her little brother had passed away. You know those rare moments in life that you remember with vivid detail? The smells, the color of light, the layout of a room, and precisely what you were doing at that very moment, something big happened … those details of life that seem to crystalize in your mind. Forever. I remember, as a young boy, exactly where I was when I heard the space shuttle Challenger explode. I don’t remember anything else that happened that year … not like I remember that moment. I just remember crying as a young boy because I knew people were hurting over such a loss.
Well, this night was one of those moments I will never forget. “Ash,” I said with a whisper. She arose instantly, as if her body and soul knew something terrible had happened, “I’m so sorry, but Mitch passed away.” No sooner had I uttered those words than her eyes gushed with tears as she fell back to her pillow and wept.
Laura-Ashley faithfully loved and served her little brother, and they had developed a deep bond between them. I marveled how she balanced softness with strength – a testament that we, being human, are quite capable of being both. On the one hand, she would speak ever-so tenderly with Mitch, and you could tell she listened with her heart as much as her ears. At the same time, she would carry her not-so-little brother on her back with ease. She was strong yet tender … a beautiful blend of attributes I long to possess.
I took this photo on the California coast while on our last summer adventure with Mitch. He loved the ocean and was fascinated by the power of waves. Mitch couldn’t play in the ocean by himself at this time in his life because even the tiniest wave would knock him helplessly over. Where smaller children could play in the splash and foam of the ocean’s edge, those same waters were more punishing for him. Even the smallest wave threatened to knock him over. Any prolonged exposure to even moderately deep water, causing him to adapt to the ebb and flow of the current, would tire his muscles quickly, and he would most certainly drown if left to his own strength.
Laura-Ashley, this beautifully kind sister, sensing little Mitch wanted to experience the ocean again, heaped her brother on her back and began walking into the water. Mitch laughed and squealed as the waves rolled by and tickled his feet. At this moment, it occurred to me in ways it hadn’t before that there’s something very special about a sister.
As I captured them playing, I remember being washed over by waves of love and gratitude for my daughter and son. Of all the world’s greatest riches, none compared to the treasure of this moment with my children. They were a gift to each other, and their love was awesome to see. Love, after all, is the substance of life and the fabric of eternity.
When I look at my own life experience, sisters and mothers seem to balance out fathers and brothers.
I don’t know what it is, exactly. I only know the world is richer because it is filled with loving sisters.
Our goal was to get him home as fast as we could. Mitch had days to live, but there were times at the hospital he was so animated, we wondered if the doctors misdiagnosed him. But, like a thief in the shadows, symptoms of heart failure would suddenly emerge and turn the happy boy we knew into someone distant. Someone very, very sick.
Just moments before this photo, Mitch was laughing. My sweet daughter, Laura-Ashley, made cupcakes to cheer him up. She handed one to him, but Mitch turned his head and said, "I'm not feeling well." In his heart, Mitch wanted to eat one – but at this moment, his world was being turned upside down.
I'll never forget meeting with a team of specialists as we were preparing to leave. Each took their turn, educating us on what to do under certain circumstances. If I thought taking a newborn baby home to live was overwhelming, I had no idea what it would feel like to take our baby home to die. The instructions were soul-crushing. If something medically scary happened, there was no ambulance to call, no future hospital visits to offer a glimmer of hope. Just a constant stream of medicine to erase from my son's mind oxygen hunger, morphine to whisk away the pain of organ failure, and other drugs to buy a little time.
The nutritionist was about to tell us what Mitch should eat; she paused as if to remember Mitch only had days, then said, "You know what, it doesn't matter. Let him eat whatever makes him happy." I nearly burst into tears as my heart fell to the floor, bleeding and writhing. Medicine had taken us as far as it could. Nature, faith, and fate were all that was left.
While Mitchell's physical heart was failing, his spiritual heart remained tender and teachable. As parents, our spiritual hearts were being tested. But then, a beautiful paradox emerged as our son became our teacher. If Mitch could face death with a humble heart, we could, too.
Some wonder (even criticize) why I return to these moments, detailing agony and trauma. As if to retraumatize myself with each story. What I've observed about trauma is that it's first like a rapidly spreading cancer, weaving its tendrils into our minds and hearts, then it lies dormant. Seemingly invisible. It feeds off inattention and misdirection. I believe trauma can be seen to some degree, but the bulk of its roots seem to live in the deeper parts of our psyche. As far as I can tell, trauma thrives in the unexamined shadows of our souls, unexplored and misunderstood. If left unattended, the ripple effects of trauma can turn into waves and disrupt us for the rest of our lives.
I visit these moments to discover and untangle trauma, removing its poisonous dripline, root by root. Is it uncomfortable? Of course. But so is dressing a deep wound. And with each time I apply the medicine of meaning, I heal a little. Sometimes a lot.
So why this moment? This moment taught me what being courageous looks like. Sometimes having courage looks like being sick, sad, or tired. Sometimes courage shows up as tears and overwhelming heartbreak. Fake courage puts on a mask and cape and pretends it doesn't hurt. True courage is admitting we're trembling at the knees while mustering the strength to take one more step. And if we don't have the strength for one more step – that's quite alright. We can rest a moment and take another step tomorrow.
Separate from pain, trauma will likely come to us all in one form or another. We may not be able to change our circumstances or avoid outcomes, but we can change what meaning those experiences have for us. And that's an act of courage, too.
