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I took this photo nine years and a few hours ago, today.

It was the most tender of times. Little Mitch was denied a heart transplant, and just days earlier, his cardiac MRI revealed his heart was profoundly damaged. Hanging by a thread, really.

At the time of this photo, Mitch had come to my office. “Hey, Dad,” he said softly. “Can I just sit by you?”  I smiled and said, “Of course, Mitch. I love it when you’re near me.”  With that, I pulled a chair close to me, chair arms touching, and Mitch watched as I tried to wind down the day. Occasionally he’d put his hand on my arm and squeeze it as if to hug me. I would do anything to hear his voice and to feel his hand again. Not long after he sat down, Natalie came into the room to tell us dinner was ready. With her came a delicious-smelling waft of dinner waiting upstairs. Mitch looked at me and smiled, then stood and started talking to Natalie in front of my window. She did what she does so naturally: love. She grabbed his face, looked Mitch in the eyes, and told him just how much she loved him. I wanted to freeze time – and I suppose with this photo, I did.

You know the saying, “It’s later than you think”? It was late. Very late. In just a few weeks, we’d go to the hospital and learn death was not only coming, it was gashing at our door. The summer of our lives was ending, and we would soon feel grief like a winter wind to our souls.

When this photo came up in my memories today, I began to think of the paradoxes of light and darkness and what I can learn from them. For years I used to think of grief as only darkness. Lately, I’m beginning to think of suffering and grief as a different kind of light. It’s not that grief and sorrow aren’t dark and awful. They are. But I’ve discovered when I close my eyes and quiet my soul, a different set of eyes begin to open. Kind of like the saying, “It’s not what you look at; it’s what you see.”  So, when I stepped into the darkness and allowed my spiritual eyes to adjust, it was as though a door opened from within the prison of grief, and I walked into vast corridors of learning and deep meaning – hidden only by the shadows of sorrow.

My deepest learning, I’ve discovered, happens in the paradox. 

A few years ago, I wrote an essay examining the duality of grief entitled, “I’m okay, but I’m not okay, and that’s okay.”  It was a tender reflection on a conversation I had with my oldest son, who barged into my office while I was in a moment of deep grief over losing Mitch. I quickly wiped my tears and tried to seem normal – but, as with most things, humans aren’t very good at hiding. Ethan said, “Dad, are you okay?”  I did what most men do: I blamed the tears on a rock in my eye – as though it happened while eating boulders, dirt, and tree logs for breakfast.   I rolled up my proverbial lumberjack shirt, thumped my chest, and pretended to be strong and okay. That’s what men do, right? Well, that wasn’t exactly me – but it was kind of me. My impulse as a grieving father was to shield him from my truth. I wanted to let my son know he could come to me with his troubles – and I was worried if I was an emotional wreck, he may be afraid to talk to me.

But then I thought to myself, “How is this teaching my son to live an authentic life?”  “How will he feel safe if I’m pretending to be something I’m not?”  On the heels of pretending to be strong, I told my son I was okay, but I wasn’t okay ... and that was okay. He nodded to me with a sigh of relief – because he knew I was being honest and in honesty there is safety.

That essay “I’m Okay, But I’m Not Okay, And That’s Okay” has been read by millions. Why do those stats matter? They do, and they don’t. They don’t matter concerning me; they only matter because of what it signals. It signals that people want to make sense of the paradox of life. How can someone be okay and not okay at the same time? And is that okay? People were drawn to that story because they realized they weren’t wrong, broken, or abnormal to be two (or more) things at once.

You see, we’re never just one thing. We’re many things at once. We are both harmony and contradiction, love and anger, faith and doubt, grief and joy, fear and courage … the list of dualities is infinite. If you are one thing, you also possess its shadow. 

The trouble is because we’re human; we seek symmetry and safety. Oppositely, paradox feels a lot like brokenness and danger. As far as I can tell, it seems that running from unavoidable pain and discomfort is where we miss out on life’s deepest discoveries. 

Learning to sit in the paradox is where we discover profound truths about ourselves and others.

At the surface of things, learnings from the paradox look a lot like this:

• The more we learn, the more we realize we know nothing.

• If you want to learn deep patience, spend time with someone that deeply annoys you.

• If you want to understand forgiveness, look to the person who most hurt you.

• Empathy and suffering are symbiotic soulmates.

• You cannot have courage without fear.

• Healing hurts.

So, when I look at this tender photo of my wife and son, I’m awash in a curious potpourri of grief and gratitude. As Rumi wisely wrote, “What hurts you, blesses you.”  And in that paradox, I sit. I pray. I listen. I learn.

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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.

Apple Podcasts:

https://tinyurl.com/b6nn6e2k

Spotify:

https://tinyurl.com/mtjxdhnf

Google Podcasts:

https://tinyurl.com/429dn94c

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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.