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 BEAUTIFUL, UNSPEAKABLE LOVE OF MOTHERS

Tucked carefully just under Natalie’s pillow is a purple blanket, worn out and threadbare. It was one of Mitchell’s favorite blankets when he was as a toddler. Among the many places she might keep that treasured heirloom, it rests to this day quiet and unassuming, near her head when she sleeps.

When Mitch was a tiny little boy, he found special comfort in soft things. I’ll never forget when Natalie handed Mitch two small fleece blankets – one was purple and the other green. Mitch immediately smiled and pushed the blankets up to his cheeks. His chubby little fingers felt the soft fabric, and he was in love.

Once again, I was witness to the beautiful, unspeakable love of mothers.

For many years, Mitch clung to those two blankets as if were imaginary friends. I didn’t realize how much he treasured them until the day I found him quietly whispering to himself as he was stuffing both blankets in the produce drawer of our fridge, for safe keeping. When I giggled, Mitch turned his head and smiled and said, “Hi, Dad. One second … one second.” He finished securing his treasure in the fridge, then ran up to my leg and hugged me.” I asked him, “You love those blankets, don’t you?” He said softly, “I wuv them. Mommy gave them to me.” At that moment, I began to see the beautiful, unspeakable love of mothers anew. To our tiny child, those blankets weren’t just a warm fabric from which to cuddle on a cold winter’s night; they were a symbol and an extension of his mother’s love, and it comforted him so.

As the years passed, Mitchell grew up and out of those two blankets. Because they meant to him as a toddler, we kept them safe knowing one day; they would mean more to us than perhaps they ever meant to him. As Mitch grew older, he discovered other symbols of his mother’s love – and he clung to those in times of comfort and in times of trouble.

Years later, when we discovered Mitchell’s heart was about to stop beating, Natalie instinctively ran to the gift shop at the hospital to find something that might give her baby comfort, once again. After scanning the shelves, Natalie finally saw a soft teddy bear whose broken heart was patched and stitched, with a kind of homemade variety. Most importantly, you could tell that tender heart was being held up with love. Natalie’s eyes filled with tears and said, “Chris, this is it. This is what I want to give Mitchie.”

As we walked back to the Cardiac Intensive Care Unit, Natalie clung to the teddy bear as if to transfer a portion of her love to it so that it might, in turn, transfer that loving care to her sick and dying child. Once again, I was witness to the beautiful, unspeakable love of mothers.

When we returned to his room, Natalie said softly, “Here you go Mitchie – here’s something to cuddle with. I hope you like it.” Mitch smiled and said, “It’s really soft. I love it.” By this time, Mitch was beginning to feel sick and said, “Mom, will you tuck me in with this teddy bear?” Mitch fell fast asleep that night – and I can’t help but think it was in part because of his mother’s tender love.

I’ve watched this sweet mother quietly grieve the loss of our child for 1,866 days now. That’s not 1,866 days of wallowing in self-pity – but instead, learning to live a parent’s worst nightmare. The nightmare doesn’t change over time because the inescapable, irreversible facts of death don’t change.

I’m just a brokenhearted father who loves his family and who misses his son deeply … but however much I miss my son, I can tell the space between a mother and her children is a sacred place. Today, like little Mitch did so many years ago, she clings to the symbols of love she had with her son.

Natalie has learned to put her love and pain (which is grief) in an invisible treasure box – for you can’t have one without the other. I'm forever humbled to witness the beautiful, unspeakable love of mothers.

IT MATTERS

Never had the closing of a door been so terrifying. The funeral director reverently moved the flower arrangement so the casket could be sealed shut … sealed for as long as the earth would last. My hands began to shake, and my knees trembled as I stood agonizing over the finality of it all. My little son, who loved life and thought I could save him from harm, was gone.

This moment that you see here was one of the hardest moments of my life. I couldn’t bear to see my little boy’s likeness being swallowed up in the shadow of the casket door. I had to look away, for I could not bear the sight of it. I looked down and wondered if I could ever gather up the broken pieces of my heart … for there were more than any mortal could count.

If life matters, so does death … and every moment in between.
— Christopher M. Jones | Mitchell's Journey

Desperate for comfort, little Wyatt leaned his tear-drenched face into me and wept. And my sweet, tender wife felt a grief so deep, death would have been a sweet release.

Everyone in my little family was broken, and I couldn’t fix it.

C.S. Lewis, an author I have long admired, said this: “It is hard to have patience with people who say ‘There is no death’, or ‘Death doesn't matter.’ There is death. And whatever is matters. And whatever happens has consequences, and it and they are irrevocable and irreversible. You might as well say that birth doesn't matter.”

If life matters, so does death … and every moment in between. Those who walk in grief carry a heavy burden and pain that cannot be seen. Some are impatient or insensitive with those who grieve … others are simply mean. To them I say, it matters, the life and death of a human being.

It hurts because it matters.

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.

A LABOR OF LOVE

Last week, on the 3rd anniversary of our son's passing (the very day, in fact) we received a package at our door. With trembling hands, we opened it only to discover a cross stitch of our son patterned after one of our very favorite images of Mitch. Meticulously woven by different colored threads, it looked like a photograph.

A compassionate follower-turned-friend gave this to us as a labor of love and a token of her affection. I remember first becoming aware of her when I saw her post photos of her family wearing#milesformitchell t-shirts as they participated in our virtual runs. They would make hand-drawn posters and gather as a family to take pictures, expressing their love and support. I was so humbled by her love made visible.

So, when Natalie and I had the pleasure of finally meeting Vanessa Bryson and her son in South Carolina when we gave a keynote at a conference a few weeks ago, I felt like I was seeing a long-lost family member. She was just as loving and kind in person and she seemed online. 

A day prior to this package arriving we received a smaller package that contained a loving hand-written note, a few first place ribbons she won at a competition along with the proceeds of her winnings to be used for flowers at Mitchell's headstone. My wife and I wept over her incredible gesture of love.

This beautiful work of art ... this love made visible ... will hang in our home as both a reminder of our son whom we miss so much and the amazing people that live on this planet; people who care enough to reach out and love complete strangers. Thank you Vanessa, for your love and friendship and for being such a tender part of our healing journey.

THE TROUBLE WITH TIME

The trouble with time is we always seem to think we’ll have enough of it.
— Christopher M. Jones | Mitchell's Journey

The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son. 

The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.

Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band aids, scraped knees and children’s books. But that was not our lot in life.

I’ll never forget our first encounter with our hospice nurse. She was so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition to death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare my son.”

After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to truly grow.

Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow. 

So there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears wondering how I could have been a better husband and father. I made plenty of mistakes and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes and I always made things right with my kids. Instead I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.

The trouble with time is we always seem to think we’ll have enough of it. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much.