A few weeks ago, I was asked to speak with Sarepta, a drug company whose doing some remarkable work with therapies related to DMD. Just prior to my speaking they were learning about pathology and the natural course of its biology. When I was introduced, they said I was going to talk to them about the human side of the disease. They wanted someone to lift the curtain so they could peer in and see the human impact of rare, catastrophic disease.

Because their leadership theme was on frontiers, they asked that I share the tiny frontier’s we faced as a family. From starting a family to diagnosis, progressive loss, death, grief and recovery, each of these presented themselves with new landscapes and challenges.

Using the metaphor of ascending a mountain, I shared an excerpt from an essay I wrote a few years ago entitled “My Everest” where I said I would rather look up on Mount Everest from the comfort of my rocking chair, by a gentle pond.

But life is neither fair nor is it always kind. Somehow, some way, we all must climb our personal Everest.

In this post, you’ll see a few excerpts from my presentation, including a conclusion video that combines two ideas: facing new outward frontiers and the deeper frontier that is found within.

Speaking of the internal frontiers, toward the end of my address, I talked about a certain type of bamboo seed that is known to take about four years to water and care for before it breaks soil. Then, it will grow over a hundred feet in a single month. My point with that example is we can often become impatient with grief, healing or otherwise growing. I shared a few ideas that I’ve discovered that help foster an emotional and spiritual environment for deeper growth.

The video at the end of this post summarizes some of the key ideas I was trying to convey - most notably the greatest frontiers we will ever face are the ones found within each of us. And, like a bamboo seed (see post, Bamboo & Better Days Ahead), it can take years before we see growth of any kind. Patience and persistence are key.

View fullsize

I took this photo at a family function today and was overwhelmed with feelings of love and gratitude for my wife and kids - at the same time, I felt an empty longing for little Mitch. What I’ve learned on my grief journey is that I can be happy and sad at the same time, restless and still, empty but full.

More than anything, I am in a place of peace and acceptance for all that there is, all that ever was, and everything that is yet to be.

I have more stories of tender Mitch I want to share - but I’ve spent the last few months focused on my family. Healing from the loss of a child, it turns out, takes more than a little time ... it appears to take a lifetime.

#mitchellsjourney #makeeverydaycount

View fullsize

My daughter took these photos the day after Mitchell came home. He was so excited to be surrounded by all that was familiar to him. Most importantly, he was grateful to be with his family – for, above all else, family is what he loved the most.

“Within a few days of this photo, Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne.

A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted … ”

— Christopher M. Jones | Mitchell's Journey

My wife and I were anxious to hold, hug and kiss him without the spider web of cables, tubes and IV’s. It was a surreal time for us. 48 hours prior to this very moment Mitchell had a team of 12 medical professionals all working vigorously to keep him alive. At home, he had 1 hospice nurse whose job was to help him feel comfortable and usher his body through the painful process of organ failure and death. 

For Mitchell, touch was important to him. No blanket that could replace the warmth that came from his parent’s embrace. Ever since he was a baby, he would rub his forehead against mine -sometimes for minutes at a time. He wouldn't say a word and neither would I; we didn't need to. We spoke more in our silence and gestures than could ever be communicated by words alone. This was one of his ways of loving deeply and I never tired of it. I yearn to do it again today, and my heart sinks to the depths of my soul that I cannot.

Within a few days of this photo, Mitchell lost the ability to smell. It never came back. He would tell me later how much he missed smelling the things he loved. He yearned for the scent of his favorite shampoo, the smell of popcorn and his dad’s cologne. He had an appreciation for the little things in life, and I admired that about him greatly. A week before he passed away Mitchell asked if we could go to the store to buy shampoo that had a stronger scent … so that maybe he could smell again. I hugged him and quietly started to cry. Oh, the little things we so often take for granted … 

I will never smell things the same again. Never a scent my nose encounters that I don’t thank my God for all that I have.

Over the last 2 years, I would occasionally ask Mitchell what advice he would give people about life. Without fail he would respond “Be nice to each other and be glad you’re alive. Nothing else matters.” With this philosophy, he never varied. I found it fascinating that a child so young was so attuned to the intrinsic value of life. What’s more, he understood the deeply spiritual value of kindness. Most young children seem to worry more about playthings and consumption (perhaps too many adults do, too) – but Mitchell possessed a sobriety about life and relationships that was far beyond his years. It was as if his soul knew what was to come long before his mortal body failed him.

I was raised to accept the fact life is tough, because it is. And at some point, the world tells us we have to suck it up and take it like a “man” or a woman, or a lion or a bear. But I also realized in the privacy of our bedrooms or the quite of our minds there is often an unspoken dimension to us . . . a part of us that is vulnerable and mortal; a part that loves deeply and hurts honestly. 

Years ago I stopped pretending to be a lion or a bear. I decided to be human – and that has been liberating. 

Three weeks after my daughter took these photos, Mitchell’s weary and scarred heart, after having fought valiantly to survive, fluttered and stopped. 

I would give everything I own, or could ever hope to be, to have my little son back with me. His broken heart, a heart that loved deeply and hurt honestly, was more noble and worthy than all the lions and bears on earth. Mitchell reminds me what it means to be human and that the lions and bears we often pretend to be are just a mirage. My son taught me there are no lions or bears, only humans … and to pretend otherwise is to cheat others and ourselves.

One day, when we all have eyes to truly see, we’ll come to know there was so much more to mortality.  That to be nice to each other and grateful for life are among the prerequisites to spiritual sight.

View fullsize

A few years ago, I wrote a story entitled, “It’s Okay, You’re Safe With Me.” I reflected on a time we took our kids to an amusement park to take our minds off the harsh realities of our son’s fatal diagnosis. At the time, tiny Mitch clung to my hands as we sat in a small pirate ship that swung back and forth like a gentle pendulum. It was the mildest of rides, but to little Mitch, it was thrilling.

“Among the agents of change, there’s the passage of time, however fast or slow. Then, alas, there’s the furnace of affliction – and it’s in our damage that we truly grow.”

— Christopher M. Jones | Mitchell's Journey

A few years passed and we visited that same theme park. Within eyeshot of the kiddie pirate ship towered a much larger pirate ship – this one designed for adults. This ride, too, swung back and forth like a giant pendulum; only the back-and-forth was on a much grander, vertical scale. In fact, that ride always had me somewhere in the middle of trying to catch my breath amid butterflies and wanting to take a nap from being rocked to sleep.

On this day, a much older Mitch sat next to me. When he was tiny, he had to hold on to almost every part of my body to feel safe. By this age, sitting next to me was enough. I thought to myself, “My, how things change.” I was so proud of this little boy and all that he was becoming.

So, as the ride began, Mitch tightly grabbed the bar in front of him and smiled. “This is so much fun, Dad,” he said with a smile. Not only was Mitch older and unafraid, but he had also grown an appetite for the rush and thrill of roller coasters.

Quietly, I admired him. My little boy learned to face his fears in his youth in ways I wished I could as an adult. Despite being young in years and physically weak, Mitch was dauntless. Like most young boys, there was part of Mitch that wanted to be like his dad. If only he knew how much more I wanted to be like him.

A few short years would pass from the moment of this photo, and things would change even more. I’d find myself kneeling at my son’s bed as he neared death. Whatever bravery he demonstrated earlier in his life, none compared to the bravery he had then.  Not only was the loss of my son about to change my world, I was changing on the inside, too.

Just today I read a post from Jackie, a friend of mine, who was reflecting on a great difficulty she’s endured. She quoted a friend and mentor who once told her, “I hope we make our pain worthwhile.” I loved that sentiment – because we’re all going to get hurt in life, so we may as well grow instead of gripe.

That isn’t to say we become flippant or callous toward the suffering of others. In fact, there is a certain sacredness to suffering. I’ve discovered that suffering has drawn me closer to God than any sermon I have heard. At the same time, I reverence the suffering of others because I know what it’s like to tremble in the dark – looking for hope or the faintest spark.

Japanese writer Haruki Murakami observed of suffering, “Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.”

Yes. Life has an interesting way of changing us. I don’t believe we’re meant to stay the same. Instead, we are [spiritually] designed to change and grow. Among the agents of change, there’s the passage of time, however fast or slow. Then, alas, there’s the furnace of affliction – and it's in our damage that we truly grow.