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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.

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Every time I saw Natalie comfort Mitch, I thought I witnessed the most beautiful scene in all the universe. It was the day before Halloween, and Mitch wanted to get on with life and not be stuck at the hospital. Mostly, he was excited to greet kids who knocked on the door and give them candy. Mitch was a tender giver.

So there we were. Mitch just received an echocardiogram. We were sitting with his cardiologist, who was trying to educate us on heart failure. With a light thump of a knuckle on the door, a technician slipped in to hand our cardiologist the results. He paused a moment to digest what was on the paper, then said, “May we speak privately?” Immediately, the already tender lump in my throat ballooned into a boulder. I could hardly swallow.

Laura-Ashley got up to take her brother on a gentle stroll in a wheelchair around the hospital. As the door shut, his already faint smile began to fade into a look of deep concern. “Things aren’t well,” he said with a pause. “A lot has changed since his echo in the spring.” As he began to describe how Mitchell’s heart function declined rapidly, he warned, “Your son is at risk of sudden death.”

Grief washed over me like a title wave. I stood still, doing my best to remain stoic and composed, but on the inside, I was thrashing about and gasping for breath. If I, being a simple father, felt that way – I imagined at that moment how much more my dear wife felt the title wave of grief. For she carried Mitch in the womb of her body and hearth of her heart; she had a connection to our child only mothers know. My heart went out to Mitch and my dear wife, for neither deserved what was before them. My soul yearned heavenward – bargaining to take their place.

About 20 minutes later, after talking about what to do, our daughter and son returned to the examination room – unaware of the new weight placed on our shoulders. My hands were shaking from fear and grief. We did our best to put on a brave face – but on the inside, my wife and I felt like children ourselves – very much in need of comfort. We were desperate to keep our broken boy’s body together while, at the same time, we were falling apart.

What I thought was breaking inside me that day didn’t compare to the shatter I experienced in the months and years that followed.

It’s been 8 years since losing our boy, and I have witnessed the breaking of myself, my wife, children, and others. Whether through death, disease, misfortune, or poor choices, not one of us is spared. Being mortal and flawed, we all break and then pay the price in one way or another.

Being broken can be so many things; it can be toxic, hateful, fearful, or humbling, tender, and beautiful. We all break, but what we do with our brokenness that matters. And it matters a lot. It seems there are two types of people in the world: those who are broken and those that admit it. I am eternally drawn to the people who admit it.

Niels Bohr (a fascinating philosopher and scientist) observed, “The opposite of one profound truth may very well be another profound truth.” On the deepest level, I agree. I often see that principle play out in the world of grief and brokenness. Yes, to break can be devastating, but it can also be beautiful. I can imagine how probably all of us have observed how some broken people tend to hurt other people, but we’ve probably also seen broken people become healers.

Mitch taught me what being broken and beautiful looks and feels like. When I grow up, I want to be just like him. As I continue to discover my own broken parts, which are many, Mitch taught me to focus more on purpose and less on the pain. And when I do that, love and empathy are what I gain.

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Journal Entry: February 10, 2013

Today was a mixture of grief, peace, fear, and love. Mitchell was so happy to be home. It was almost dreamlike. There were no hourly stats being taken by a nurse. No more chaotic mess of cables wired to his body effectively chaining him to his bed. No monitors with alarms that signal the biological horror show that is playing out under the surface of his skin. Just smiles and 100% focus on family.

For the most part, Mitchell was comfortable today. He was able to play with one of his best friends. We made more Legos, cuddled, played UNO, built a base in Minecraft, had lots of conversations, played other video games, watched a movie, and just spent time together. At this very moment, I can hear his sweet little voice in my mind …. as if it were an audible sound. I love the sound of his voice … the way he thinks.

So we try to live each moment as though it were our last. We will only have now – for tomorrow will be different, it will be less. Certainly, less of something and more of another . . . but it will be less, nonetheless.

To me, it is strange to think that ~15 years ago there were 4 less people on the earth . . . and I was quite content without them. But now that I have them, I cannot imagine a day without them – not even a minute. There’s the saying: “Making the decision to have a child - it's momentous. It is to decide forever to have your heart walking around outside your body.” I always admired that quote – but now it has taken on a much deeper meaning.

Mitchell’s left eye became very blurry twice; once in the morning and a second time this evening. The second episode was more intense and lasted longer than the first. Our nurse informs us that his profusion is so low that organs will begin shutting down very soon. It looks like his vision may go soon. He is getting dark rings under his eyes. We’re also told it won’t go away and will get worse. Sometimes his chest pounds so hard it looks like there’s someone inside his rib cage trying to violently punch their way out. Those are scary times. Very scary.

The truth is, grief comes in massive waves … almost instantly …. and without consideration or apology. And between the agony of the inevitable and moments of calm, I sometimes feel a panicked rush ... the horrific feeling that I need to race to do something else for my sweet little boy. Oh ... how my heart wants to... I yearn to save him. My mind understands what’s happening and why. But my heart sometimes desperately searches for a way out … something we missed. Then, it occurred to me in a moment of profound spiritual peace … that perhaps in all my rush to save my boy, a greater purpose to all this suffering is at play … and in the end, he will be the one who saves me.

There is a transformation occurring. Something profound. His life, his sweetness, his goodness … it is changing me. And I want to be a better husband, father, friend, and human because of him. His short and tattered life has a divine purpose. And while painful now, all will be made whole in the end.

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NOTE ABOUT THIS ESSAY:

I’ve been getting messages from a lot of readers lately sharing their grief, wondering if they’re normal (if there is such a thing), and if the night will ever end. My heart goes out to everyone who suffers in whatever way they suffer. I wish I had the power to heal others – that is my heart’s deepest desire.

I thought I’d share a sacred journal entry exactly 8 years ago today. This was my grief. This was my son. I share this journal entry for those who sit on the edge of significant change. I stand with you in the sacred space of your suffering.

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I remember this cold winter night when Natalie tucked our sweet boy in.  Mitch loved to be tucked away before he slept and the closer his tender little life came to the edge of the abyss, he seemed to want that comfort more and more.  I believe part of him, sensing time was short, was afraid of the night – for what if he didn’t wake?  Mitch didn’t want to die; in fact, he very much wanted to live.  Though his muscles were getting weaker and he was able to do less and less, he wanted to hang on to whatever life he could.  As I mentioned in an earlier post, he wasn’t a glass half empty/full person … he was just glad there was something in it.  For Mitch, even the smallest drop in his cup was cause for gratitude.  Oh that I could be a shadow of him.

“The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped. That is how we hold our broken pieces together. ”

— Christopher M. Jones | Mitchell's Journey

After talking for a while, Natalie reached over to Mitch and they gave each other a warm embrace.  My heart swelled as I saw these two remarkable souls hold each other as if to say to each other, “I’ll hold your broken pieces.”  Natalie fought valiantly to keep Mitchell’s broken body together while his sweet soul seemed to hold her broken heart and keep it as one. 

There was never a night that little Mitch didn’t get this same hug from his mother.  She was his greatest comfort in life and he loved her so.  Though I tried to be there for my son in every way I knew how, there is simply no equal for a mother’s love.

This photo was taken January 12th, just a few days after we learned his heart was collapsing and that therapies were not working.  He was denied a heart transplant because he had a fatal disease and all we had left was precious time.  We didn’t know how much time – we just knew the end was coming.  Natalie and I cried every night under what felt like an ever blackening sky – for hope had faded like the evening sun.  In the darkness, fear of losing him loomed heavy like a thick fog and we didn’t know where to go or what to do.  We just knelt and prayed for help.

Two weeks later Mitch would be admitted to the ER for end-stage heart failure … and though we already felt broken, we were about to be broken further than we could imagine as we watched our boy slowly die.  Then came grief, which broke our brokenness even more.

My greatest heartache in life was then, and remains today, knowing that we couldn’t save him.  That is a grief of another sort … a grief added to his death.  A grief twice.

Since Mitchell’s passing, Natalie and I have learned how to hold each other’s broken pieces together.  It isn’t always easy, especially when we feel like we’re falling apart ourselves – but we find a way to set aside our sorrows and be there for each other … and that is what makes the difference.  The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped.  That is how we hold our broken pieces together.  Mitch was scared, yet he tried to comfort his mom anyway.  In return, he received great spiritual comfort.

I know that Mitch and my Father are holding some of my broken pieces together, pieces unknown to me.  I can sense heaven’s hand in my life – and for that I am grateful.  Though I carry great grief, I also carry gratitude for feelings of peace.