A REASON FOR GLEE

There is a saying that reads, “Do not teach your child to be rich. Teach him to be happy. So when he grows up, he’ll know the value of things, not the price.” I always loved this saying for many reasons and have tried to help my children appreciate the little things: soft pillows, macaroni and cheese, and blanket forts. After all, true value has little (if anything) to do with price –and the things of greatest value cannot be purchased with money. Not at any price.

Once I discovered this, the relationship between the highway and this canyon began to serve as something of a metaphor to me – a reminder that sometimes I can’t see a thing until I step back and look from a different vantage point.
— Christopher M. Jones | Mitchell's Journey

During his last summer of life, Mitch spent some long-awaited time at his grandmother’s ranch in Southern Utah. On this day life couldn't have been more awesome; the weather was perfect and glee was floating in the air like spring pollen. On the horizon, you could see the ancient fingers of Kolob Canyon which stood towering into the sky as a majestic reminder that our lives are but a blink and humans are only transients on this planet … this classroom of rock and water.

Before my mother moved to her ranch I drove by this canyon a thousand times, oblivious to the true beauty of the landscape I was passing. The highway hugs the mountain range and base of Kolob Canyon in such a way you cannot see it (not even a little bit) because the road is too close to it. Without the proper perspective, everything feels ordinary. But, if you take an exit near the canyon and get a little distance from the highway, you will see the most amazing mountain range. This canyon is one of Utah’s best-kept secrets – invisible to the casual traveler.

Once I discovered this, the relationship between the highway and this canyon began to serve as something of a metaphor to me – a reminder that sometimes I can’t see a thing until I step back and look from a different vantage point.

My experience with Mitch taught me the same thing. As I travel the long road of grief, when I step away from my sorrow and look upon the landscape of this experience from a different vantage point, I see beauty. I also see reminders this place is not home … that I, too, am a transient and will one day travel to a better place.

I love this photo because it reminds me Mitch lived a good life. If there were one image that best illustrated my son, this is it. Mitch was happy – not because of things, but because he was loved by his family and he discovered ways to find joy in everything. I have recently discovered many videos of my family where you can see Mitch skipping in the background (unaware he was on camera) because he was simply happy. Although the road he traveled was hard, and he could have found a million-and-one reasons to complain about life not being fair to him, he always stepped away from his limitations and appreciated life from a different vantage point. He saw the canyon.

While having lost my son has been a source of great sorrow, he is also a great source of inspiration to me. And though I walk imperfectly, I will learn from my little boy. Like Mitch, I will find a reason for glee. For indeed, as I step away and look upon my life differently, I can clearly see there is beauty all around me.

Thank you, Mitchie, for teaching me to be happy – to always find a reason for glee.

THE WORK OF REMEMBERING

About a year after Mitch passed, Wyatt asked to visit the cemetery, so he could reflect on life and remember his older brother.  Young Wyatt began to notice his memories were fading and said in a tearful tone, “I’m afraid of forgetting my brother.”  Wyatt and I sat on the west side of Mitchell’s headstone as the sun began to set.  I just listened to Wyatt share what was on his young mind and little heart and how much he wanted to be a good boy and follow the example of his brother.   

... to be remembered is not the substance of life – but paving the way for others is.
— Christopher M. Jones | Mitchell's Journey

On Mitchell’s headstone, I could see Wyatt’s reflection inside his shadow and took this photo of what I saw.  I couldn’t help but think how quickly memories can fade if we’re not careful to record them.  I also began to think how quickly we can forget some of life's most important lessons.  I hope always to remember the people and the lessons – so that I might grow from the love I felt and the things I’ve experienced.  That’s why I do the work of remembering (writing about) little Mitch and our journey with him.

I recently read an article about grief where the author said the greatest fear of a parent who lost a child was having their child forgotten by others.  While that may be true for some, that’s not how I feel. 

It wasn’t many years ago I was working on a documentary and stumbled into an old funeral program from the early 19th century.  Printed on the cover was an almost daguerreotype image of someone reminiscent of the pioneer era.  Written boldly on the cover of the program were the words, “Gone but not forgotten.”  I immediately thought to myself, “If only that were true.”  There, in my hands, I may have been holding the only visual breadcrumb of that man’s existence … evidence he walked the earth and had an impact in his sphere of influence.  It was clear he would be missed by those who knew and loved him, yet generations had since passed, and that lone memorial somehow found its way into my hands.  As far as I could tell, the memory of that good man was all but a vapor.  His memory scattered like dust by the winds of time.

As I’ve reflected the harsh reality, I began to examine why I write of little Mitch. I determined that I don’t write to fixate on the past but to learn from it and change how I step into the future.  I don’t write to keep his memory alive in others – instead, to keep his memory alive in me.  I write so I can make sense of suffering and remember the lessons I’ve learned through heartache and a veil of tears.  I write so I might look heavenward and learn what I must – for all too soon, my time will be up, and I will fall into that deep sleep from which there is no return.  One day, I will be like billions before me --- gone and soon forgotten.  That’s fine by me; for, to be remembered is not the substance of life – but paving the way for others is.                                                                                           

I suppose that’s why I share my journals – so perhaps a flickering candle of faith might light the path for someone else walking a dark road.  When people write me private messages after having read an entry and share how they went their knees and asked their Father if He lives, and how they received an answer, I weep tears of gratitude.  When a mother or father shares how they’ve become more loving or in the moment with their child, my heart is made glad.  Those are the reasons I share stories of Mitch – not that people will remember my son, but that individual lives might see something anew and make a change for the better. 

This work of remembering (Mitchell’s Journey) is about the examined life and making a change for the better.  For it isn't enough to remember the people and events in our lives ... but instead to find meaning.  And if all these stories amount to helping a single soul, even if it’s just one;  my heart will be full, and an important work will be done.  

I SEARCH FOR WORDS, YET THERE ARE NONE

 “Dad, will you open the blinds so I can look out the window?” Mitch said softly as he sat up on his bed.   

Reverently, I lifted the blinds so Mitch could look out the window unobstructed.  I was quiet about it, too, for this was a sacred time when death was near, and the veil was thin.  It was a cold, wintery day and snow covered everything.  The light of late afternoon had become soft and warm as if to compensate for winter’s chill. 

The end was coming; man and medicine were powerless to stop it.

Mitch looked out the window in silence.  At that moment, his countenance changed from that of a young boy to one of an old soul emerging.  I asked him what he was thinking, and he shook his head as if to say, “Not now, Dad.”  Mitch then said, “I’ll tell you later.” 

He knew he was going to die, but he didn’t know he only had a few days left.  None of us did.

I watched my son in silence – respecting his need for space.  I searched for words, but there was none.  I wanted to hold him tight, help him feel safe, and tell him all would be okay.  But things weren’t safe, and he wasn’t going to be okay.  The end was coming; man and medicine were powerless to stop it.

I said a prayer in my heart, “Oh, Father, please … I’ll pay any price.  Can I take his place?”  I guess that was my way of bargaining – and I did it a million times a day.  With all my prayers, I knew that none of us could escape death – nor can we escape hardship.  I understood that it rains on the just and the unjust and we must learn to bear our burdens patiently.  I understood the wisdom of an old Jewish proverb, “Don’t pray for lighter burdens, pray for a stronger back.”  Although I always prayed for a way out - I also said, “But if not, please help us carry this burden.”

Little Mitch never told me what he was thinking that day.

This sweet boy lived out his remaining days as gently as he came into the world.  As death was gnawing and gashing at our door, Mitch surrendered his soul to God with the faith of a child and the heart of an angel.  He was a giant among men, and I was then, and remain today, deep in his shadow; for I am less than a shadow of a man.

In my darkest moments, I searched for words and found none; until I learned to quiet my mind and heart so I could see all that God had done.   It was then and only then I found gratitude in the midst of grief

One day, when I go to that place beyond the hills, I will thank my Father for loaning Mitch to me.  My son, my brother, my teacher – a gift burdened by adversity who taught me how to see. 

NO SMALL THING

Tiny Mitch reached up to grab a door handle that stood just above his head.  He had an almost tangible curiosity about him this day – so much so, he would have seemed mischievous if he wasn’t so innocent.  With a soft tug, his chubby hand and tiny little fingers began to pull downward.  If you were listening carefully, you could hear the old springs in the handle ping and poing as rusty mechanics began to move.

To an adult, this was just an ordinary doorknob.  To this little boy, that golden handle was a gateway to endless curiosities just beyond the finger-smudged glass.  

... when I think I’ve reached the furthest depths of love for my children, I find that it continues to deepen with each passing day. How deep that love will go, I cannot say. I only know my love is deeper than it was yesterday.
— Christopher M. Jones | Mitchell's Journey

Tiny Mitch didn’t realize I was following him, so I kept my distance and zoomed in with my lens.  By this time in his life, he was so used to sounds of my camera he had no idea I was shadowing him.  I followed him because I wanted to keep my tiny boy safe from harm … but I was also curious to get a glimpse into his little mind and heart.  “I wonder what he does when no one is looking …”, I thought to myself.  

As the door opened, Mitch walked outside … and, like a good little boy, he closed the door behind him to keep the cold Wyoming wind from stealing away the warmth of the cabin.  Then Mitch crawled backward from the edge of the old wood patio, down a few stairs and began to tromp on grass browned by an early winter’s chill.  I waited patiently until his back turned, then I opened the door quietly and stepped outside.  A kitty approached him and Mitch began to talk to it in ways only a 2-year-old can know.  Softly he hugged his furry friend and kissed its head.  I smiled at Mitchie’s goodness and wanted some of that to rub off on me.  After a few minutes of furry love, Mitch began to walk toward a bush that was home to a little bird’s nest, or so it seemed.  He got on his tippy toes as he pulled a branch down only to see an abandoned nest.  He smiled softly, then turned to explore a pile of wood.  He talked to himself and hummed nursery songs.  At this moment, my heart broke open and poured out more love than it could possibly hold.  I never knew how much love a heart could hold until that moment.

What I learned about little Mitch that day was how much he loved to be alive, even as a toddler.  I also discovered anew how much little things matter. He found joy in the smallest of things.  There wasn’t a flower he walked by that he didn’t lean in to smell softly.  Not a furry pet he didn’t want to love, or a sunset admire.  Mitch not only taught me how to love him, but how to love everything and everyone.

Later that night I knelt in prayer thanking my Father for the gift of little ones.  I thought I had known love before I had a child.  But, I soon discovered a love so deep that it changed me from the inside out.  Completely.  Even still, when I think I’ve reached the furthest depths of love for my children, I find that it continues to deepen with each passing day.  How deep that love will go, I cannot say.  I only know my love is deeper than it was yesterday.

If ever I am discouraged about a personal failure or disappointment, this image gives me hope.  It reminds me that, in the grand scheme of things, we’re all toddlers reaching to open doors and make new discoveries.  And though we may be imperfect, our Father sees us reach and try, and we are loved.  That is no small thing. 

INEVITABLE REGRETS

It was a hot summer afternoon at grandma’s house when Mitch reached into his backpack with a subtle, almost mischievous smile, then retrieved my swimsuit. He knew I always forgot to bring my trunks so he went into my bedroom and packed them for me. “Dad, here’s your swimsuit.” Then, with a soft voice, he said, “Will you swim with me?” I chuckled briefly and then, quite unexpectedly, my heart melted as I saw my son’s tender face that seemed to say, “Dad, I don’t have much time.” Then, a lump filled my throat as I thought of the many times he wanted to swim with me and I came unprepared. In the most tender, almost apologetic tone I said, “Mitch, I would love to swim with you.”

We spent the better half of the afternoon playing “Super Shark” and a handful of other games we made up over the years. It was a tender time and a memory I hold dear to my broken heart. 

I didn’t know how to be a dad – and I always felt like I was making things up and stumbling more than making good strides. My youth was complicated and I never had a day-to-day role model to emulate – so I didn’t really know what real fatherhood looked like. My biological father was a good, loving man but I only saw him for a month during the summer. The man I grew up with was angry at the world and especially angry with me, for some reason. My dad taught me how to love, but my drunken step-father (at the time), taught me how it felt to be isolated and despised. I learned to flinch, not flex and grow in confidence.

Because I felt the deep pain of rejection as a child, I never wanted my children to feel any part of what I experienced, so I did my best to give them what I wished I had. Sometimes I wonder if little Mitch wanted to swim with me because he knew I would scoop him up in my arms and hug and kiss him, all the time. 

So there I was splashing around in the pool with my son. By this time, I knew Mitchell’s heart was failing him and it had only been a few months since we learned his heart function was on a steep and unexpected decline. Not a day passed that I didn’t wonder and worry if we were doing enough. We consulted with his doctors and tried medicines that were thought to stabilize his rapid heart decline. Everything failed. We did all that we knew to do and yet we couldn’t save him. When I look back on that labyrinth of decisions with unknowable outcomes, I am tempted to feel regret. 

A few weeks ago, Natalie and I were asked to share some of our thoughts to a group of parents who have children with the same disease Mitch had: Duchenne Muscular Dystrophy. One of the panel questions was about making decisions and how to keep from looking back and wondering if they should have done something different. I appreciated that question because I understood it on a very personal level. 

No matter what you do in life, you’re going to make mistakes and regret is inevitable. That is part of being human.
— Christopher M. Jones | Mitchell's Journey


My response was “No matter what you do in life, you’re going to make mistakes and regret is inevitable. That is part of being human.” I suggested, “Perhaps we’re better served if we worry less about life’s inevitable regrets and spend our energy doing things that will limit the depth and severity of regret.” I believe if we spend time and energy focusing on the things we truly value, we will stumble, but we won’t stumble far. Our regrets are more likely to feel like bruises, rather than broken legs.

I mentioned in an earlier post that my son’s journey has taught me to turn regret into resolve. I discovered that regret is inevitable, but resolve is a choice. 

Do I have regrets? I have a million of them. But, I have a million more resolves.

As long as I am human I will experience regret; the best way to live with them, as far as I can tell, is to know what I value and always do my best. That is how I've learned to live with inevitable regrets.

NOTE TAKEN

When our children were little they looked forward to our Friday night den parties. I remember these nights so well. After they were bathed and dressed in their jammies, each child would carry a Sippy cup of juice mixed with a little water, a small bowl of popcorn and their favorite treat into our family room to watch a Disney movie. We didn’t have much – so we made what little we had count. Despite our struggle to make ends meet life was sweet back then and I wouldn’t trade it for anything. 

I had a lot of self-doubt at the time, wondering about my place in the world and what I was supposed to do with my life. But one thing I never doubted was my desire to be a good husband and a loving father. I loved being a dad. I wasn’t the best at it … I really wasn’t … but I tried. Looking back, I would have done so much differently as a father. Yet, I don’t let my failures of the past haunt me … instead, I try to forge those failures into a personal lesson learned. A kind of mental note I take, so I can avoid future mistakes. I’m not sure I am good at that, either. But I keep trying to learn and grow from my wins and losses. One of the many beautiful things about children is their unconditional and abundant love. No matter how many times I might have disappointed them, been grumpy or impatient, they forgave me freely … and for that, I am eternally grateful. 

It is interesting how forgiveness begets deeper love – and deeper love begets more forgiveness. Another note taken.

So on this ordinary summer night, Mitch became especially giddy. This tiny boy, the youngest of the bunch, loved being with his older siblings at every opportunity. He wanted to be just like them. 

Mitch danced around the room in his cute little sweat pants and Spiderman shirt singing incoherent songs. He would then run back to this table, take a quick drink, then prance around some more. I could never pick him up and kiss him enough – sticky cheeks and all.

Reflecting back on good memories has been an important part of my healing – and I am grateful for so many of you who have listened with caring hearts and mourned with those that mourn. There is healing in that, too. Though I reflect on my memories in this place, I am actively creating new memories with my family – and that is just as important to my own healing. I need them both. 
As ordinary and routine as life may have felt at the time, looking back, these moments now serve as a counter balance to sorrow and loss. When grief seems especially heavy, these sweet memories give me something to be grateful for. And gratitude is no empty thing: for it fills my heart and causes my soul to sing. Gratitude, my friends, soothes grief’s terrible sting. 

Note taken.

 

FATHER & SON

“Hey little Mitch,” I said with a soft voice, pointing to the inside of a book. “Will you put your arm here so I can trace it?” Mitch looked at me with a soft but curious expression, “Okay, Daddy.” Mitch flopped his tiny arm on the book and said, “Huwwy, Dad. I have to play wiff fwends.” 

Fighting back my tears, I carefully traced his little arm and even smaller hand. Anxious to go outside and play in the summer sun, Mitch didn’t know this book told a terrible tale about what he would one day experience. He only knew his mommy and daddy loved him and that they would always keep him safe. Mitch, like many young children, worried about monsters hiding in closets or under beds. I worried about the monster hiding inside his body. A monster so frightful and mean, all the science and medicine on earth could not stop it. 

When I was done tracing his chubby little hand I kissed Mitch and said, “Daddy loves you.” With that, my little boy dashed away without a care in the world. Inside, I felt like I had the weight of the world on my shoulders.

For nights-on-end, I sat weeping at my kitchen table as I read this book … a book which, at once, read like a medical text and a horror novel. Though slightly dated, this was the only content I could find at the time that was unflinching in its description of DMD and offered candid advice on how to cope with the harsh realities of muscle wasting. I cried, and I cried. And when I felt pulverized by sorrow, convinced there were no more tears, grief found deeper reservoirs of the soul, and I cried some more.

It wasn’t until my son died less than eight years later that I discovered there is no end to tears. For if there is no end to love, there is no end to grief. At least while I’m mortal.

I believe one day grief will change. Not today. Not in 50 years. As long as I’m mortal, I will grieve over the loss of this little boy I love so much. Grief is a heavy burden of the soul. With each day I carry the weight of grief, I feel myself getting stronger. With each fallen tear, I am learning a deeper compassion for others who hurt. With every heartfelt prayer for relief and understanding, I draw closer to my Father. I know He is there, and I know He cares. I believe He wants us to be strong as well as good – and that is partly why we suffer. I am not strong, and I don’t think I’m very good … but I’m trying. I will never stop trying.

I found this book the other day as I was preparing for a Mitchell’s Journey presentation at a medical school. I had long forgotten I traced Mitchell’s tender hand so many years ago. When I opened the book my heart fell to the floor. I cried that moment like I cried way back then. Only my tears were from loss, not the anticipation of it.

This little hand is evidence my son lived. Though he is gone now, the memory of Mitch lives in my soul, and I cannot get him out of my mind. I am grateful that his memory isn’t a source of agony anymore – but instead a source of deep love and joy, and yes, still pain. Because of Mitch, I have gained a deeper appreciation for life, family, and love. I have learned what it means to be a father and a son. Though imperfect and flawed, each day I try to be a better one.