TINY FRONTIERS

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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.

A LIFETIME

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

LIONS AND BEARS 


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.

HOW THINGS CHANGE

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.

FEAR & COURAGE*

The door to my home office burst open with a big waft of air … “Chris, guess what?” Natalie said with a smile.  I was so startled by her sudden entry, I began to worry a pipe broke in our basement apartment and that our few newlywed belongings were being washed away.  “Is everything okay?” I said anxiously.  She paused, “I’m pregnant.” 

In that singular moment, I was overcome with two emotions.  On the one hand, I was excited because I always wanted to be a father.  At the same time, I was frightened and said to myself, “I am so inexperienced with life … am I ready for such a responsibility?”  Ready or not, we were going to have our first baby and it was up to me to rise to the challenge of fatherhood.  We were poor as church mice, trying to fight our way through college and full-time jobs.  I wouldn’t be honest if I didn’t say I was afraid of the future.  I was young and afraid. 

In life or in the face of death, there are moments every human will shudder with fear … and somehow, some way, we must find a way to take up courage to face the things that frighten us. 
— Christopher M. Jones | Mitchell's Journey

Soon our little daughter joined our family and my heart was spilling over with love. She was a most precious little girl and I loved seeing her personality emerge.  Over the next few years, I saw her become an independent, feisty and compassionate little girl. Ever since she came into my life, I have tried to fiercely protect her from people who might use or take advantage of her. My greatest desire then and now is to help her see her true worth – for I love her so. Thus began our family – under less-than-perfect circumstances and in many ways under a shadow of self-doubt and fear.

By the time Mitchell was diagnosed with DMD, Natalie was already pregnant with our 4th child, Wyatt. Fearing our newest baby might have DMD, a medical professional suggested we think about aborting our baby. We dismissed the notion wholesale because we valued life more than our inconvenience. What’s more, although Mitch was diagnosed with a fatal disease, his tender life was still worth living. For he found much joy in his life, and so did we.    

We were prepared to accept our baby no matter what physical challenges he might have. As mother and father, we would stand united and love our child with all we had. We were still afraid of the future, but we faced our fear with whatever faith and courage we could muster. That was the best we could do. I suppose that is the best anyone can do.

So on this day, I’ll never forget our newborn sleeping peacefully on the examination table as Natalie took on a most ponderous demeanor. This was the moment we would discover if Wyatt had DMD. She seemed to look upon him as if to say, “Sweet baby of mine, no matter how heavy the burden, I will carry you all the days of my life.” Such is the magic of motherhood.

A blood test would soon reveal Wyatt was perfectly healthy and fear retreated like the evening tide. That night, I knelt at the side of my bed and tearfully thanked my Father for my family. I was grateful Wyatt was healthy. I was also grateful we were blessed with Mitch, broken wings and all. Though I felt inadequate, I promised to do my best to be a dad and asked that He would somehow make up the difference.

Whether I’ve faced professional insecurities or deeply personal self-doubts, I have confronted my fair share of fear, worry, and discouragement. What if I ran from fear? What if I turned my back on fatherhood and abandoned my family when we discovered Mitch was sick? I would have missed one of the most profound blessings of my life. Everything that has ever scared me, when confronted, has made me stronger.

In life or in the face of death, there are moments every human will shudder with fear … and somehow, some way, we must find a way to take up courage and face the things that frighten us.

No matter how much I want to, I cannot know the future. So, when I face fear or the unknown, I try to remember the phrase “Courage is not the lack of fear. It is acting in spite of it.” Then, I do what my sweet wife taught me years ago, I take the next best step.


These are images of Wyatt having blood drawn to screen for DMD.

There is a profound story surrounding little Wyatt: an answer to prayers, his birth and his life.  That story is shared in our Tender Mercies presentation.

KEEP TRYING

By all accounts, it was a perfect day if there ever was one. It was early summer and the colors of nature were lush and vibrant. The temperature was in the Goldilocks zone … not too hot, not too cold … it just right. We were visiting grandma and grandpa at their ranch in Southern Utah.

Mitch had a gentle way about him and earned the trust of animals very quickly. That was one of his spiritual gifts, I believe … a gentle soul who brought peace to others.
— Christopher M. Jones | Mitchell's Journey

Among the reasons he loved to go the ranch, I believe seeing the many animals that lived there chief among them. There were horses and cows, chickens and ducks, alpacas and kittens, and of course a never-ending tribe of rabbits and baby bunnies. There was even a pet turtle. Then there were wild animals: deer, turkeys, snakes of all kind, and the occasional footprints of a mysterious mountain lion on the outskirts of the ranch.

Mitchell’s fascination with animals was matched only by his love for them.

On this occasion, Mitch wanted to visit some of our Alpacas. They’re a most curious animal … intelligent, inquisitive, alert and generally friendly. They also have distinctly unique personalities; some are docile and kind while others are a little insecure and tend to show off. The brown Alpaca (on back right) was named Javier and was especially insecure and liked to show everyone who was king of the hill. Mitch would laugh and laugh as he saw him prance around and act a furry fool.

Mitch had a gentle way about him and earned the trust of animals very quickly. That was one of his spiritual gifts, I believe … a gentle soul who brought peace to others. Though he is gone from this mortal place, Mitch still brings peace to my troubled heart – and I thank my Father for that. Sometimes I think I can feel him nearby tending to my own brokenness, ministering to my soul like an angel. For little Mitch knew what it was like to be broken – therefore, I think he can help those who are broken.

Mitch gently walked up to these alpacas wanting only to love them. At first, they were skittish, but in Mitch fashion, he somehow made them feel at peace and he was able to pet them. Mitchell smiled as he was able to serve these animals with love.

At one point, the alpha alpaca turned away from Mitch probably to see if Mitch was pet another side to him. Suddenly, that alpaca’s instincts took over and he kicked Mitch in the thigh … and hard. Mitch didn’t cry at first but was shocked that animal would do such a thing - especially when all he wanted to do was to help. Then, as the shock wore off, Mitchell’s feelings were hurt and tears began to roll down his sweet face. Natalie lifted the leg of Mitchell’s shorts only to reveal a hoof print on his tender skin.

It didn’t take long before the trauma faded and Mitch wanted to go back and love these animals again. Mitch wasn’t angry at the animal who kicked him … he only wanted to try harder to be Javier’s friend.

In life, others have kicked me when I wasn’t expecting it. Like Mitch, I was shocked and sometimes deeply disappointed in the person. Though I wish those experiences didn’t happen, I have grown because of them. Like Mitch, I didn’t want to retaliate but instead tried to show them I wasn’t their enemy – but in fact their friend, interested in their happiness and success.

Little Mitch taught me to keep trying. Though some people may never figure it out – and they’ll keep kicking at me, I will be at peace knowing I kept trying.

For when I try, I grow. Life's too short to live it angrily, this much I know.

MITCH & MARCO

Today we filmed the first part of a documentary on Marco Simmons, an undefeated MMA fighter who competes in memory of Mitch and in hope for many children across the world who suffer from DMD, a catastrophic muscle wasting disease.

We were so inspired by Marco, his remarkable family and the people he surrounds himself with.  This is going to be an inspirational story we can't wait to share.

Register with our new website, mitchellsjourney.org to get updates and special access to some behind the scenes footage.