SOMEWHERE, ON THE FAR SIDE OF THE SEA

Tucked away in a quiet corner of my home, deep in the shadows of a bookshelf, is a mold of my son gently holding my hand. This artifact is as close to seeing Mitch in physical form as I’ll ever see again in mortality. It's hidden from view, not because it isn’t special – but precisely because it is. I keep it tucked away so it can be safe from unintended harm.

This mold was taken just before Mitch came home from the hospital on hospice. If you look carefully, you’ll see a puncture wound, in the form of a small bump, on the back of Mitchell’s hand. It is just above his wrist, bearing a mark from an IV that had recently been removed. Were you to see this in person, the detail is breathtaking. Every bump, every little flaw, every little part that made him so beautifully human, was captured and preserved. Natalie has something similar with Mitch – except in that mold, a Band-Aid covers his IV wound, which makes it even more tender and unique.

I discovered sometimes you can’t make sense of suffering, but you can make peace with pain. When that happens, it’s not that you stop hurting; you simply learn to live with longing.
— Christopher M. Jones | Mitchell's Journey

At the time these molds were taken, Mitch didn’t know the doctors said he had days to live – and I’m pretty sure he just thought mom and dad were being weird. But then again, it always seemed he knew more than he let on. He not only had a look of knowing in his countenance, but he would also say things from time to time that revealed how deeply perceptive he was.

When I look at this life-size statue of my son and me holding hands, I see several conversations at once. First, a whisper between a father and his little boy, “I love you, son, so very much.” Then, “I love you, too, Dad. I know you’ll keep me safe.” At the same time, because I knew my son’s deadly secret, I see a one-way narrative, “Sweet boy, we’re almost out of time. Let me hold you before it’s too late – for tomorrow, I will miss you forever.”

The final unspoken narrative, at least to me, is symbolic of two souls drowning in a sea of trouble.

At least to me, this statue with my son contains a deeper metaphor; that of two drowning souls trying to comfort each other in their hour of need. As Mitchell’s life was being swallowed up by the sea, I felt like we were both drowning, only differently, me in grief and Mitch to biology.

My wife and I knew what was about to happen, and we felt like we were drowning in grief. Yet, we didn’t know how deep and dark those waters would soon become. As terrifying as grief was at the time, we were still splashing in the shallow end of sorrow. Deep grief would eventually come, years after the loss of Mitch.

Before I knew it, little Mitch was gone, and my wife and I were left feeling empty.

A few months later, the board of a company I was running pitched in and sent our family to Hawaii to get away and perhaps heal a little.

One night, while my family and I were on the shore, I took a photo of the sunset (seen in this image) and wrote the words, “Good night, little Mitch. You are always on my mind. And while I know you're not lost at sea, sometimes in my heart, you may as well be.” Then, Mark Allen, a thoughtful and inspired friend, commented on my post: “Consider him your lighthouse now... so you can make it back home...” I was grateful for his words of compassion and faith.

I’ve spent the last 7 years gathering up my broken pieces, healing one grief moment at a time. I’ve felt my way through the darkest shadows of death and tried to make sense of suffering. I discovered that sometimes you can’t make sense of suffering, but you can make peace with pain. When that happens, it’s not that you stop hurting; you simply learn to live with longing.

I still miss my boy. I think about him every day and wonder what memories we might have made. And when I see his childhood friends in our neighborhood, almost young adults now, I marvel how fast time has passed.

I still wonder what happens on the other side of life. You know that place over there … on the far side of the sea. Sometimes the waves of grief are so great they completely swallow me. Other times I wade softly in the water, smooth and placidly.

The struggle to keep from drowning has made me stronger and given rise to a different kind of me. I’m still flawed and tread water… but I see the world differently… thanks to my son, somewhere over there … on the far side of the sea.

A FAITHFUL FRIEND IS A STRONG DEFENSE

I remember this moment so vividly; the cold December air on my neck, the subtle clatter of teeth shivering in the wintry wind, and the smell of burning wood from fireplaces nearby. The smell of chimney smoke seemed to beckon us back to grandmas with the promise of a glowing hearth and delicious hot chocolate to warm us on the inside and out.

It hadn’t snowed yet, but you could feel winter was near.

Mitch, ever anxious to drink life in by the gallon, asked if we could drive ATV’s around the woods. At one point, Mitch wanted to stop and see his Grandma’s garden that had long gone to sleep for the winter.

Mitch said softly, “Dad, will you take a photo of Effie and me?”

“I’d love to!” I said with a smile.

I remember chuckling at Ethan, who didn’t get the memo; it was actually cold outside. I mean really cold. For the most part, he didn’t mind; and though he was under-dressed, he seemed to have my Canadian tolerance for cold air. He welcomed wintery weather in summery clothes. Mitch always thought his brother was a touch weird - which is why he loved him so. I was enjoying this time with my oldest boys but couldn’t wait to snuggle by the fire and drink hot chocolate.

It’s a curious thing how a single moment can be two things at once. In this case, it was a beautiful tragedy. On one side, I was glad to be with my children; on the other side, my soul was heavy. Mitchell’s face seemed pale as the November sky and his eyes seemed to whisper to me he knew his time was short. I was weighed down by a vague and pressing feeling time was slipping through my fingers at a rate I couldn’t fully appreciate. At one point on this trip, I had a distinct impression this would be Mitchell’s last time at Grandmas. From the time this photo was taken, Mitch had a little more than three months to live.

The more I step back and examine Mitchell’s life, the more I believe he was inspired. You see, he acted on feelings he had, and those tiny impressions-turned-actions would eventually become breadcrumbs of love for the ones he left behind. This photo is one of those breadcrumbs, a gift to his brother, and a gift to me. His silent acts of service remind me to slow down, listen, and give more of my actual myself.

When my boys sat to have their photo taken, the ancient Apocryphal words came to mind, “A faithful friend is a strong defense: and he that hath found one … hath found a treasure.” Captured in this image was not only two brothers, but two friends. I was grateful Mitch had a faithful friend in his brother, and Ethan had a faithful friend in Mitch.

Young Mitchell’s life was made rich by faithful friends. He had a few of them he especially loved – Luke, Derek, and David were his closest – but he had many others he also adored.

In my short 46 years, I’ve discovered casual friends are plentiful, but a truly faithful friend is as rare as it is special.

When I think about the kind of friends Mitch had and the friend he tried to be to them, I want to work harder and be a better friend to the people I love. I have my family who I love so very much – they’re not just family, they’re my friends. Add to that, a growing list of people near and far, whose friendship I treasure.

This image haunts and inspires me. It reminds me to slow down because time moves so fast. Mitch is looking at me in this photo, and I can almost hear him saying, “Dad, there isn’t much time. Let’s make the most of it.”

This Thanksgiving, I’m going to express my gratitude to my family and friends by slowing down and being more deeply in the moment. What better way to express my love and gratitude for my family and friends than by giving them all of me? I can think of none.

FEELING THE SUN DESPITE THE RAIN
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I took this photo 7 years ago today. We had just left the cardiologist and learned that therapies were failing. Because Mitchell’s heart was in serious trouble, we petitioned for a heart transplant which would be denied a few weeks later. Thinking back on this uncertain and tender time feels like two things at once: like it was yesterday and also a lifetime away.
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The strange thing about healing is when I look back on our suffering, I see more beauty than pain. 🙏🏼 Its not that the storms of grief are gone, it’s more like I can feel the sun despite the rain.
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#mitchellsjourney

THE DEEPER MEANING OF HOPE

Tomorrow I'll have an opportunity to speak at the annual Utah Program for Inherited Neuromuscular Disorders (UPIN) conference.

I've been asked to speak on grief & hope - a topic that is near and dear to my heart.

Over the years, I've become something of a grief anthropologist, I suppose, trying to understand the meaning of my own journey. I hope to share things tomorrow that will be useful to those who face an uncertain and difficult future.

The key topics we'll cover are:
- The Deeper Meaning of Hope
- When Hard Things Happen (short overview of Mitchell's story)
- Confronting the Big Question
- A Key to Happiness
- The Healing Power of Gratitude