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

A FAITHFUL FRIEND IS A STRONG DEFENSE

When I close my eyes, I can remember this moment so vividly; I can still feel the cold December air on my neck and hear the subtle clatter of teeth shivering in the wintry wind. Night, with its arctic air, was approaching, and each breeze began to cut through your clothes a little deeper than the one before. It hadn’t snowed yet, but you could feel winter was near. The smell of burning wood from fireplaces nearby 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.

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 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 warm smile.

I remember chuckling at Ethan, who didn’t seem to get the memo; it was cold outside. I mean really cold. And for the most part, he didn’t mind. Though he was under-dressed, he seemed to have my Canadian tolerance for cold air. He often welcomed it. Mitch always thought his brother was a touch weird - which is why he loved him so.

Although I was enjoying this time with my oldest boys, my soul was heavy – weighed down by a vague and pressing feeling time was slipping through my fingers at a rate I couldn’t see or appreciate. I could only feel it. At one point on this trip, I had a distinct impression this would be Mitchell’s last time at Grandmas. It turned out that my impression was correct. Though my conscious mind didn’t exactly know what was happening, somewhere in the depths of my soul, something inside me seemed to know. From the time this photo was taken, Mitch had a little more than three months to live.

The more I examine Mitchell’s life, the more I believe he was inspired, then acted on things that 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.

When the 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.” (Ecclesiasticus 6:14)

When I took this photo, I didn’t just see two brothers; I saw 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 others, 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 – and I am also blessed with friends across the world.

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

FINDING SIGNIFICANCE IN SIMPLE THINGS

Evening was drawing near when Mitch asked if our family could go on a ride around the neighborhood. His muscles were getting weaker by the day, and walking distances of any length were more than he could bear. As the world was getting bigger for healthy kids, Mitchell’s world was getting smaller. His options, more limited. But Mitch smiled anyway and was glad to be alive.

Whenever possible, Mitch wanted to go outside to feel the wind on his face and experience any part of life. Sometimes I wonder if my grief is magnified because I know how much my son appreciated being alive – and my heart is pained that his life was taken away. But those are the thoughts of a mere mortal, and I know that there is more to life and death than we imagine. Even still, death hurts me so.

So, on this peaceful evening, Ethan took point on his bicycle, ensuring the path was clear for his brother while Mitch tugged his sister on skates. Mitch enjoyed giving others rides because it allowed him to do something nobody else could. What made him different also made him special.

Like Mitch, I loved the atmosphere of sunsets and always paused to appreciate the beauty of natural light. Just as I was admiring the sky, Mitch looked up at me and said, “Dad, isn’t it beautiful tonight?” I smiled and said, “Yes, Mitch, it is beautiful. Just like you.” I leaned down and kissed his head only to catch the faint scent of shampoo; a hint bedtime was near. I thought to myself, “How I love having children.”

When I think back on my most treasured memories as a father, they’re found in the most ordinary moments – those times and occasions that seem to hide in plain sight. They’re the things I am tempted to overlook and take for granted. I don’t know that I’ve ever confused shallow things for significance – but I have sometimes missed the simple things, not recognizing how significant they truly were.

I have written in the past that grief is my teacher – but what does that mean, exactly? One example, at least for me, is grief has taught me the very things I long to do with those who are gone are the things I should seek after with those who are now living.

I don’t grieve that I can’t take Mitch to Disneyland. I grieve that I can’t sit on the couch and read books to him. I don’t long to go on vacation with my son, I long to tuck him in and listen to him talk about his day and share his hopes and dreams. I don’t miss taking him to a fancy restaurant; I just want little Mitch to sit by me at the dinner table again and hold my hand like he used to. If it’s the ordinary stuff I long for, then it is the ordinary stuff I should seek after and cultivate.

Looking back, I can see how easily one can get swept up in grief and sorrow – so much so, it becomes a paralytic. Yet, my grief doesn’t paralyze me; it mobilizes me. You see, the irony of death is it has taught me how to live. My pain, for example, has led me to my life purpose. I don’t know that I would have found it otherwise. I suppose I can thank my Father for that. It seems to me that pain in life is inevitable, finding purpose is a choice.

If my son’s journey has taught me anything, it’s taught me slow down and find significance in simple things. And when I do that, gratitude and joy inevitably follow.

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REPOST from 2017