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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.

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Toward the end, Mitch was becoming increasingly weak. His fate was slowly becoming visible – which was difficult to watch. You see, to have a child with DMD (or any fatal illness) is to watch your child die in slow motion.

“I’m pretty sure if my little boy were still with me he’d add, “And help each other along the way. Life’s too hard to do it alone.””

— Christopher M. Jones | Mitchell's Journey

On this day, we had just taken some family portraits - something I rarely did because I never felt I was very good at it. I preferred more candid photos of our family anyway. Mitch was so cooperative and tender when it was his turn – and because of that, we were blessed to capture a portrait of Mitch that was a mirror image of his sweet soul. I will forever treasure that photo.

When it was time to move on, Mitch said softly, “Mom, will you help me off the ground? I can’t do it by myself anymore.” Natalie’s smile faded slightly, and a pang of sorrow showed through her countenance.

By conventional terms, Mitch wasn’t strong – but he was strong where it mattered ... and that's all that mattered. The notion of strength these days seems to masquerade as brute force, chest-thumping, and vitriol. The irony of anger imitating as strength is when everybody is yelling, nobody is yelling anymore. Outrage becomes the new normal – and never have I seen a man more careless and weak as when he was drunk with rage.

Author Eric Hoffer observed, “Rudeness is the weak man’s imitation of strength.” I’ve seen plenty of rude people in my life. Ironically, in their perceived strength, they were weakest. I’ve seen successful people fail at being true leaders when there was an opportunity to do a good work for humanity and mentor a rising generation with capacity and great desire. I’ve seen some of them abandon reason and their religion for madness and disillusionment. While they were pointing to the failures of others, the more searching question they ignored was who really failed who.

In contrast to those would-be-giants who took a low road, I see my son in this photo … weak, inexperienced, yet sincere at heart. Even in all his weakness, I discovered tremendous moral strength. Mitch learned what so many forget these days, to “Be nice to each other and be glad you’re alive. Nothing else matters.” I’m pretty sure if my little boy were still with me he’d add, “And help each other along the way. Life’s too hard to do it alone.”

I’ve been taught that we are given weaknesses in this life so that we might become humble. And, if we humble ourselves and seek God’s help, those weak things can become strong things. In matters of the mind and soul, weak things don’t automatically become strong. In fact, they will remain weak, and possibly become weaker still, if we aren’t conscious of turning those weaknesses into strengths. Heaven knows I have many weaknesses and I often seem to fall short of who I want to be. But then again, who doesn’t? Any more, I focus less on being discouraged over where I think I should be and instead more on what direction I’m headed. The journey is kinder and more rewarding that way. If you haven’t tried to see life through that lens, give it a try.

Just yesterday I was speaking with a colleague about whether the notion of “living with no regrets” is attainable. He thought for a minute and wondered where the truth was. I then said, “I believe that is a false promise. Everyone has regrets because everyone is human and makes mistakes. Instead, I believe we should learn how to turn regret into resolve. The most realistic aim in life is not to live a life of no regrets, but rather to live in such a way we’re glad we lived the life we lived. We’re glad of the joys and sorrows, successes and failures – because, if properly examined, they each contribute to making us wiser and stronger.”

Throughout my life, I have been injured by some who masqueraded their weakness as strength. In stark contrast, I’ve been inspired by a little boy whose weaknesses revealed his true strength. What’s more, my son’s journey taught me however much I stumble and fall; I have a loving Father who can help me through it all.

I am a lowly beggar in search of understanding and peace, and the heavenly paradox is it only comes when I try to bring others relief. As I get a little older, I worry less about the many and more about the one. In God’s arithmetic, it isn’t about the 99, but instead about the one. That is, and will ever be, where the work of the soul is done.

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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.

I’ve heard it said, “Sometimes memories sneak out of my eyes and roll down my cheeks.” This is a memory did just that.

It was cold outside, but my heart couldn’t have been warmer at this moment. We took our kids on an adventure to play in the freshly fallen snow. As the kids were putting on their snow clothes, Ethan pointed to his Spiderman hat and said, “Hey Mitch, look at my hat!” Mitch smiled and said, “Dat’s cool. Look at mine; it’s mommies. Its soft and will keep me warm.” Were he given a choice to wear any hat on earth or his mom’s hat, he would have chosen his mother’s every time. To Mitch, wearing her hat was like getting a constant hug from her.

“How lucky I am to have something that makes saying goodbye so hard.”

— Winnie the Pooh

With that, our kids ran outside to prance about in fluffy fields of white. Mitch reached down to gather snow in his tiny hands and threw it up in the air. He laughed as a chunk of snow landed on his brother’s head. Ethan giggled, then reached over to kiss his brother on his cheek.

By this time, the warm tears streaming down my face were turning to ice on my chin. If I could have frozen time like molecules of water in ice and forever live in this moment, I would have. I suppose, in a way, this photo did just that. I am forever grateful for tender memories – however much they might evoke feelings of loss and sorrow.

I think Winnie the Pooh said it best, “How lucky I am to have something that makes saying goodbye so hard.”