I was asked to speak about hope at the PPMD conference earlier this year in Scottsdale Arizona. I had known my assigned topic months prior, but I sat with it - not sure what I wanted to say.

Hope can be tricky.

I wrestled with the topic, not because I struggled to find hope personally, but because I didn't want to trivialize the hard realities of hope.

The more I meditated on hope, the more I realized hope in the future is a seductive mirage. Hope in the future is a mirage because the future is forever out of reach. The only thing you and I will ever truly have is this moment.

I hope this helps anyone who hurts.

I took this photo 7 years ago today. We had just left the cardiologist and learned that therapies were failing. Because Mitchell’s heart was in serious trouble, we petitioned for a heart transplant which would be denied a few weeks later. Thinking back on this uncertain and tender time feels like two things at once: like it was yesterday and also a lifetime away.
.
The strange thing about healing is when I look back on our suffering, I see more beauty than pain. 🙏🏼 Its not that the storms of grief are gone, it’s more like I can feel the sun despite the rain.
.
#mitchellsjourney

View fullsize

A few years ago our extended family went on a group vacation.  It was a time of great excitement as distant cousins reunited and family bonds strengthened.  Mitchell always felt awkward and shy around others because his muscles were weak and he didn't have the strength to do what everyone else could.  He often sat in the background as a spectator – never wanting to impose his needs or wants on others – even though he would have done anything to be recognized and to participate.  More often than I want to remember I observed people look over him as if he were invisible. It is for this very reason this photo means so much to me. 

“This summer we will see a lineup of long-awaited superhero movies.  Each story selling the idea superhuman strength, epic battles, men (and women) dripping of brawn and testosterone are heroes.  But the real heroes of life aren’t laden with technology or smothered in dirt from far-off fields.  Real heroes are almost invisible to the eye and most often discerned by the heart.  They are among us living the lives of ordinary people.  They are the ones who take the time to love and serve others: to give a stranger a friendly smile or a compliment, a compassionate ear, or some anonymous act of service.  They are people who love and give freely with no thought of remuneration … whose only payment is the internal satisfaction they did good by being good.”

— Christopher M. Jones | Mitchell's Journey

 While at the airport an uncle reached down to invisible Mitch and placed him on his shoulders.  Together they flew down the concourse … arms open and soaring like a bird.  His uncle didn't care that other adults, strangers to him, could see and hear them. He didn't pretend to be so important or busy with adult things that he couldn't break decorum and be bothered with a child.  Only loved mattered.  And that is what he gave Mitch, in abundance.  Mitchie smiled and laughed and my heart exploded into a million pieces of love and appreciation.  For a moment, Mitchell was free … he was powerful.  For a moment Mitchell felt like a superhero.  As I sat back and watched this great man love my boy I shed tears of gratitude.

 Two [almost invisible] years later our little boy would die.  And all that Mitch hoped to do and become died with him. 

As his father I wanted so badly to put my superhero cape on and save my son.  After all, he thought I was a superhero ... but I was only mortal and I agonized that I couldn't save my little boy.  As it turned out, my little son was a superhero to me.  

This summer we will see a lineup of long-awaited superhero movies.  Each story selling the idea superhuman strength, epic battles, men (and women) dripping of brawn and testosterone are heroes.  But the real heroes of life aren't laden with technology or smothered in dirt from far-off fields.  Real heroes are almost invisible to the eye and most often discerned by the heart.  They are among us living the lives of ordinary people.  They are the ones who take the time to love and serve others: to give a stranger a friendly smile or a compliment, a compassionate ear, or some anonymous act of service.  They are people who love and give freely with no thought of remuneration … whose only payment is the internal satisfaction they did good by being good.

Mitchell’s Journey has revealed many superheroes that were hiding in plain sight – all across the world.  Many of you are superheroes to my son (and my family) because you reached out and loved him … and he felt your love and concern when the world became very dark and very lonely.  It’s one thing to love someone you know; but to love a stranger, that’s divine.

In every way that matters my little son … who hardly had the muscle strength to stretch out his arms … is my superhero. Despite his failing body he kept fighting with a smile on his face, hope in his heart and love in his soul. 

Mitchell taught me that to be a superhero has nothing to do with physical strength at all – but everything to do with heart.  While Mitchell lost his mortal battle, he has won the battle of the soul.

Originally Posted April 22, 2013

(Just a few months after Mitch passed away)

View fullsize

As far back as I can remember, Natalie and I always enjoyed having people at our home; we enjoyed serving those we love with a great meal, and we enjoyed good conversation even more. On this day, we had extended family over for a BBQ. It was a hot, muggy afternoon. The cousins were busy laughing in the back yard playing on an inflatable water slide. Little Mitch didn’t have a lot of muscle strength to do what the other kids were doing, so he stayed behind and wanted to be near me, which I loved.

“I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new. ”

— Christopher M. Jones | Mitchell's Journey

I was busy preparing our meal on the grill. My tripod and camera were on-the-ready to capture any moment that caught my eye. Little Mitch asked if he could wear one of my favorite hats that had artificial grey hair sprouting in every direction from the top. At the time, I didn’t have any grey hair to speak of, and it was one of my favorite hats. Since I’ve lost Mitch, I have grown quite a bit of grey hair; which to me is a visible testament to the price we pay for grief and heartache.

Mitch always wanted to sit next to me when I was at the grill. He’d sit on a stool and quietly talk to me about things that were on his mind. Sometimes he didn’t say anything at all. He just wanted to be – and that’s okay, too. Often, Mitch would make funny observations that were both insightful and witty.

I remember this summer afternoon so vividly. I also remember having a distinct impression this day that a terrible life storm was on the horizon and that darkness was near. I didn’t understand that feeling at the time, but looking back, I can see it was my loving Father preparing me … in effect, warning me, to make moments matter.

For almost 2 years following the death of Mitch, certain places in my home evoked the most tender feelings. Whenever I was at my grill, I’d instinctively look to my side hoping to see little Mitch next to me, only to find emptiness. I’d burst into tears, and my heart would break all over again. For a season, all I saw was emptiness, everywhere. I had an aversion to certain rooms in my home – for they reminded me of my absent son and those places became a source of deep pain.

Over time, however, I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new.

I think part of my grief was magnified because I wanted to go home … you know, the home I once knew and loved. Yet everything stood as a testament that I was no longer home and that I could never go there again.

Author Thomas Wolfe wrote a book, You Can’t Go Home Again (1940), where, among other things, describes how the passing of time prevents us from returning “home again.” On at least one level, it is a brilliant meditation on life and making the most of the time we have.

On my grief journey, I had to learn that I could never go home again … at least to the home I once knew. That time before with little Mitch was my old home. Today is now and that is where I’ve learned to live.

I chronicle my journey with Mitch here, not to fixate on yesteryear and on sorrow – but instead, I write my memories as though I were a weary traveler who discovered a treasure, a memory I wish to keep. I put it here for safe keeping.

Pain has been my teacher and has shown me how to appreciate my present. Whether through death or simply the passage of time, all that we have today will be different tomorrow. In a few short years, my children will have graduated from high school, and I will never be able to go back to this home I have now again. So today, I will live in my home … my current reality … and I will love that place and all that dwell therein. For on some tomorrow, I’ll have a new home, and I’ll learn to adjust once again.