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A year had passed since we learned of Mitchell’s diagnosis and our hearts were still tender. It was mid-July and the hot summer air wrapped our bodies like a warm sweater you couldn't take off. Only the shade of a tree, a soft breeze, or a scattered cloud that covered the sun would offer a moment of relief. The sound of insects filled the air. I couldn't help but think of those endless summers I came to know and love during my own childhood; where the woods were vast and deep and perfectly camouflaged the forts we made of scrap wood and plastic sheets. Those summers I played with my friends deep into twilight. To this day I can almost hear the laughter of my friends or the voice of my mother calling me home.

The laughter I heard in my mind from yesteryear slowly faded to the back of my mind as the sounds of Ethan & Mitch came back into focus … and my heart was glad. Ethan absolutely loved his little brother, and Mitch loved him. I sat on the grass as these two little brothers romped around as little boys do. I remembered being just like them. In many ways, I still am. At one point Mitch spontaneously grabbed his older brother and kissed his cheek. Ethan instinctively wrapped his arms around him and hugged Mitch with all the love he had. Suddenly I thought to myself, “Now this is a life worth living.”

Although the future frightened us, we made a conscious effort to let tomorrow be – for we understood that to give in to worry and stress would rob us of today – and today was all we could count on. It wasn't easy. It took practice. But each day we became a little better at it. Each day we got a little better at living. A little better at loving.

A year had passed since we learned of Mitchell’s diagnosis and our hearts were still tender. It was mid-July and the hot summer air wrapped our bodies like a warm sweater you couldn't take off. Only the shade of a tree, a soft breeze, or a scattered cloud that covered the sun would offer a moment of relief. The sound of insects filled the air. I couldn't help but think of those endless summers I came to know and love during my own childhood; where the woods were vast and deep and perfectly camouflaged the forts we made of scrap wood and plastic sheets. Those summers I played with my friends deep into twilight. To this day I can almost hear the laughter of my friends or the voice of my mother calling me home.

Yet despite my sorrows, life is still worth living.

When Mitch was 3 years old he was given a death sentence. My wife and I could have wasted away our days in fear of the inevitable. But at some point we realized life is also fatal – and none of us can escape it. The point of life isn’t that we escape death, but that we learn how to live it while we have it. And to live a life of love and service is a life worth living.

As I said in a post a few years ago, "losing my son has been the bitterest of cups; it has turned my life upside down, but right-side-up."

It isn't possible to count the many pieces of my heart that are still broken and scattered about – for they are without number and seem to stretch out for miles … even to infinity. But I am picking up each tender piece as I find them and washing them with my tears and putting them back where they belong.

And while I search to heal my heart, I have discovered each time I love or serve someone my heart heals a little – and that makes life worth living, too.

The laughter I heard in my mind from yesteryear slowly faded to the back of my mind as the sounds of Ethan & Mitch came back into focus … and my heart was glad. Ethan absolutely loved his little brother, and Mitch loved him. I sat on the grass as these two little brothers romped around as little boys do. I remembered being just like them. In many ways, I still am. At one point Mitch spontaneously grabbed his older brother and kissed his cheek. Ethan instinctively wrapped his arms around him and hugged Mitch with all the love he had. Suddenly I thought to myself, “Now this is a life worth living.”

When Mitch was 3 years old he was given a death sentence. My wife and I could have wasted away our days in fear of the inevitable. But at some point we realized life is also fatal – and none of us can escape it. The point of life isn’t that we escape death, but that we learn how to live it while we have it. And to live a life of love and service is a life worth living.

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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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I remember his tiny smile as he sat in a school bus for the first time.  Mitch was about to leave on a new adventure.  He didn’t know where he was going exactly, he only knew his mommy loved him and trusted she knew best.  Natalie kissed Mitch on the forehead and said in a whispered tone, “I love you, little boy.  I’ll see you at school.” 

“This life is a heavenly classroom, clothed in mortal cares ... where we learn to trust in heaven while carrying hardships from here to there. ”

— Christopher M. Jones | Mitchell's Journey

As the big bus drove out of the neighborhood Natalie jumped in our minivan and followed them to the elementary school several miles away.  By the time the bus arrived at school, Natalie was there to help our little boy off the bus and usher him into class.  

To Mitch, the world was a very big place – made even bigger by his declining muscle strength.  A small staircase to you and me may as well be Mt. Everest to a child with DMD.  Mitch could be easily knocked down by a simple bump in a lunchroom.  Hallways made him nervous because a river of preoccupied people, in a rush to get some place, threatened to trample him unaware.

Natalie knew our son needed help, but wanted to stretch his horizons and help him grow.  So, she repeated the inconvenient routine of helping him board the bus each day and then follow him to school – where she would help him on and off the bus.  Natalie wanted our boy to learn independence.  And that he did. 

I loved this day.  I loved seeing my little boy smile at me through the window of the bus.  Mitch had this look on his face that seemed to say, “Look Dad!  I can do hard things.  I’m a big kid now.”  His eyes seemed to say, “I love you.”

I remember walking with Natalie and Mitch into his preschool class for the first time.  There he would meet “Mrs. Nancy.”  She was energetic and kind and had a way about her that brought instant relief to nervous parents and excitement in the minds of her students.  I loved her immediately.  I’ll write more of her another day – but I am grateful she was placed in our son’s path.  She was a tender mercy for our little boy.

In many ways, this image serves as a symbol of another journey.  Only this time Mitch has been shuttled to a place far from sight.  Sometimes I panic because the mortal father in me wants to know he’s alright.  Yet, I know he is fine – and in a heavenly sense, I realize he was never mine.   For Mitch is my brother, the son of my Father … even still, in his death, my mortal heart is still bothered.  For I love and miss him, you see.  And in my agony, I reach deeply for things heavenly.  Could it be that is the reason for suffering?

Somewhere out on the horizon is my son … or rather, my brother. He is at a school of another sort.  I cannot see it with my eyes … but I can feel it with my soul.  Though he may be learning and growing … I also believe he is here, even now, helping and showing. 

Now it is my turn, seated in a big and unfamiliar bus.  Like my son, – I have learned to listen and to trust. I know my Father loves me and believe that He knows best.  The wisest of all parents, He knows the growth that happens when we’re challenged and given tests.  This life is a heavenly classroom, clothed in mortal cares ... where we learn to trust in heaven while carrying hardships from here to there.  

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This was Mitchell’s last October. We went to a local farmer’s lot to pick out some pumpkins to carve. Autumn had slipped away and we were deep into fall, each day getting colder and colder. Except this day was unusually summer-like and the evening sun warmed our skin as if from a nearby fireplace.

“In honor of my son, I will look for those whose bags are a little empty and try to fill them with love and encouragement. Where I can, I will try to carry those who stumble, though I often stumble myself. For the key to happiness, I’ve discovered, is found in giving, not getting.”

— Christopher M. Jones | Mitchell's Journey

Because his leg muscles had wasted away, Mitch had trouble walking around the uneven terrain. He tripped and stumbled a few times and he was much slower than the rest of the children. I couldn’t help but notice the look on my son’s face as he saw other kids race past him. He had a look of gratitude and determination. At one point he just smiled and said to me, “Dad, I’m just glad I can still walk.” 

After a lumbering about the pumpkin patch for a while, we each took turns giving our boy a piggyback, so our little boy’s legs could rest. Though he was getting bigger each year, carrying him was never a burden but in fact a great blessing.

Halloween was just around the corner and I wondered what my boy wanted to do. Each year, trick-or-treating became more and more difficult. In the beginning, he used his electric scooter to go from home to home. As each year passed his muscles became weaker and trying to climb up a neighbor’s stairs to knock on their door was exhausting for him. The year prior to his last Halloween, he just parked on each drive way and Luke or Wyatt would take his basket and trick-or-treat for him. That wasn’t much fun for Mitch because, like so many other children’s activities, he sat on the sidelines and watch the party from afar. No matter his disappointment or wanting to do what other children did, Mitch bore his burden with a tender smile - grateful to be alive.

So, as I carried my son on my back this warm October evening in the Pumpkin patch I asked Mitch what he wanted to be for Halloween. He said, “Dad, I just want to stay home and give candy to other kids.”

“Are you sure Mitchie? I will carry you door-to-door if you want.” I replied. 

He responded with a soft whisper, “No, I want to stay home with you. Plus, I like giving to others more.”

True to his word, Mitch stayed home Halloween night and handed candy out to other children. Each time he shut the door he had a big smile on his face. Giving to others brought more joy to little Mitch than getting ever did. Although his Halloween bag was empty that night, his heart was overflowing. So was mine.

To our surprise, later that night, thoughtful friends knowing he was too weak to trick-or-treat brought him some of their candy. 

Though Halloween was different that year, in every way that matters, it was a happy Halloween.

In honor of my son, I will look for those whose bags are a little empty and try to fill them with love and encouragement. Where I can, I will try to carry those who stumble, though I often stumble myself. For the key to happiness, I’ve discovered, is found in giving, not getting.