THE REAL TREAT*

With Halloween tonight, I can’t help but think of Mitchell’s last.  In previous years, I the weight of grief was heavy on my soul – to the point, my lungs felt shallow and my chest heavy. 

 This holiday is different. 

Though I miss little Mitch, I feel a great deal of love and gratitude for all that ever was.  Yes, I wish I had the power to bring him back – but I am a mere mortal and can only bring his memory to my mind and heart.  For now, that will have to do.

I want to re-share something I wrote in 2014 – just a year after having lost him.  Lately, I’ve been re-reading my previous journal entries here and I’ve wondered to myself, “What’s changed?”  I’ll share some of those observations soon. 

Tonight, I’ll share what I posted just a few years ago.  It’s a meditation on where the real treats of life can be found; and it’s found in the giving, not the getting. 

Here is that earlier post:

 

Trick-or-Treating was always difficult for him. Because his muscles were wasting away he couldn't go very far … each year his Halloween adventures became shorter and shorter. Even though he had a motorized scooter, getting up and down, climbing a stair or two to reach a neighborhood door was exhausting for him. He usually couldn’t visit more than 6-7 homes before he could hardly walk and wanted to go home. 

To help him, Mitchell’s brothers or sister would take his trick-or-treat bag to the door while Mitch sat in his scooter on the sidewalk. Generous neighbors would lovingly place candy in his bag as little Mitch smiled in the darkness. He was always grateful.

There was another aspect to Halloween Mitch loved even more than treasuring candy unto himself. Mitch loved giving candy away at the door. To some of his closest friends who approached the door, Mitch would give them his favorite candy from his own bag. 

I took this photo of Mitch on his last Halloween. He wanted to stay home and give out candy instead of trick-or-treating himself. Each time the door would shut he would turn around only to have a big smile on his face. 

 
 
 

Mitch learned early in his life that in giving he received so much more than those who got; a life lesson he never forgot.

Later that winter my mother came to visit for a few days. We were cuddled in the basement watching a movie when Mitch struggled to get up from the couch and waddled in his funny way over to his grandmother and offered her some of his favorite cheese popcorn from Popcornopolis. I don’t think my mother realized at the time (or even to this day) the physical struggle he went through to simply get up and share what he loved. I remember that moment so vividly. It wasn't the popcorn that really mattered to Mitch, it was the giving … and it was his struggle to give that made it all the more precious. To Mitch giving was getting. 

Tonight is a tender evening for me – for I will remember my little boy who loved to give more than get. I will miss seeing that big smile on his little face and most especially his warm embrace.

Not a day passes I don't think of my son’s quiet example: he gave freely when he had so little to give, and now that is how I want to live. I often marvel and wonder, “How could it be? A little boy, mortally broken, who taught me how to see ...” One day, with a weary and broken heart, I will fall to my knees and thank my Father for sending me Mitchie.

 

ENOUGH, AND MORE*

About two months ago I was sitting near the front of a large auditorium before the annual PPMD conference was about to begin.  I was scheduled to give a keynote toward the end of the conference, and my mind was occupied, a little frantic even, trying to figure out how to best convey a message of hope and gratitude.

Though my heart remains broken, I can yet bask in the warm glow of good memories.  And in that warmth, I am grateful for all that I had – for that is enough, and more.
— Christopher M. Jones | Mitchell's Journey

My heart is never so tender as when I’m about to speak to an audience about little Mitch.  I missed my boy and wished he was still with me; yet in sharing him, whether, from pen or pulpit, I get to re-live some of the sweet and all-too-brief moments, I had with him. As a broken-hearted father, keeping my memories close helps him not feel so far away.

So, there I sat … busy worrying - worrying about what I was going to say and how I was going to say it.  I felt strangely unprepared and unqualified.  In the corner of my eye, I noticed a young man walking toward me. His body and posture carried the same signature my son Mitchell had when he was with me.  This young man (16) was from India – but living in California for a few years so he could participate in a clinical trial.  His soft, kind smile reminded me of Mitch. 

He gently handed me a small yellow bag and said he and his mother wanted me to place a gift by Mitchell.  

The lump that was already in my throat because I was thinking about my son began to grow larger.    

Inside the bag was a little figurine of a small child sleeping next to a puppy – symbolic of Mitch and the comfort he received from his little Marlie.  Also, in the bag was a handwritten letter that began with the words, “Dear beautiful, tender, and sweet Mitchell …”  When I read those words, my eyes instantly filled with tears – so much so, I nearly wept.  The letter to Mitch was thoughtful and kind and referred to something Mitchell said when spoke of forgiving an adult who was unkind to him.  Mitch said, “When you see with your heart, you see everything that matters.”

Recently this young man, Abhinav, reached out to me on Facebook and we became friends.  I’m grateful to know another young man like my son – whose heart is kind and thoughtful.  Someone who reminds me what it means to be good.

The thoughtful note and gift so touched me, and I was anxious to honor the request of this sweet family.  So, when I returned home, I went to the cemetery and reverently placed this at the foot of Mitchell’s headstone. 

I have discovered a certain peace and symbolism in this gift – a reminder that my son sleeps in peace.  It also reminds me of the sweet and tender times I had with my little boy. Though my heart remains broken, I can yet bask in the warm glow of good memories.  And in that warmth, I am grateful for all that I had – for that is enough, and more.

 

ONE STEP AT A TIME, A MOUNTAIN TO CLIMB*

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A few weeks ago, my brother and I agreed to summit Mount Timpanogos.  I was excited for the adventure because I’d never climbed a mountain before.  Even more, I remember Mitch tugging softly at my arm, deep in the evening shadow of Aspen Grove, as he pointed to this mountain and said, “Dad, I wonder what it’s like up there.  I guess I’ll never know because my legs are so weak.”  I hugged him softly and said, “Son, one day I’ll climb it and take pictures for you.”  My sweet boy smiled and tucked his head into my arms.

The next year Mitch was diagnosed with cardiomyopathy and in less than a year he died.  I forgot about my promise to Mitch because my heart broke and I was trying to keep him alive.  Then, after he passed, I was just trying to survive grief.  I’m still trying.

It wasn’t until my brother and I decided to climb it that I remembered what I told Mitch.  I didn’t say anything to anyone, because it was a promise I made my son.  I quietly printed a painting of Mitch and slipped it inside my backpack. 

On our first night, we camped at Emerald Lake and I took a photo of little Mitch and said a prayer in my heart, “Hey Mitch, it’s Dad.  I’m sorry I’m late … but I’m going to take photos for you. I hope you can see what I see.”

I learned a lot on this hike.  Firstly, I learned that I can do hard things.  I learned that I don’t like heights and I especially don’t enjoy standing on the edge of nearly thousand-foot cliffs.  I learned that it’s probably a good idea to train for hard hikes – whereas I jumped in before I was physically ready.  An indiscretion I’d pay for on the way down the mountain.  We’ll get to that in a minute.

Despite the difficulties of the hike, I was inspired by the majestic beauty of earth.  I loved the fresh air, mountain flowers, vast glacial valleys, and wildlife.  Had Mitch he been with me physically, he would have been in awe of everything. 

On day two, my brother and I reached the mountain summit.  The view was breathtaking.  

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At the summit was also a small fiberglass storm shelter with autograph laden walls – I added the signature Mitchell’s Journey 2018.  In my heart, I said, “It took me seven years to get here son, but we did it, Mitch.”

A few hours later, we were back at basecamp.  My knee was starting to swell from a surgery years ago, and I knew I was going to be slow.  I didn’t say anything about it but told my brother to head down the mountain ahead of me because I was not going to be as fast as him.  As I started my slow descent, I began to walk strangely to compensate for my injury.  Doing that made my legs incredibly weak.  It was a struggle.  What should have taken me three hours, took nine.

There were times I wondered how I could go on.  I looked down the vast mountain valley, 4 thousand feet below and got discouraged.  “Oh, Mitch, I don’t know how I’m going to make it.”  But I remembered what my sweet wife taught me, “Just take the next best step.”  So that’s what I did.  I had to stop looking at the vast distance ahead of me and just concentrate on the next step.  It made all the difference.  Though I started to walk like a drunken toddler, I looked at the ground and said to myself, “Okay, I have the strength for one more step.”  One step turned into two steps, and before I knew it 2,000 steps had passed – then I’d turn around, startled by the distance I covered.  If ever there were a metaphor for grief, this is it.  We can look across the vast valleys of sorrow and wonder how we’ll ever make it.  That’s how I survive grief – one step at a time.

There was a point that my legs were so weak that I was sure I’d collapse at any moment – and I almost did a thousand times.  My brother kept tabs on me via text.  “How are you doing?”  “Call me when you get to your truck.”  “Are you okay?”  There was a brief moment I tried to take a shortcut through some tall bushes, only to meet a 500-foot cliff.  I wasted precious energy and water trying to climb up the mountain to find my way back to the trail – I made the same loop three times.  I learned that uninformed shortcuts in rugged terrain are not a good idea.  I texted my brother about my misadventure, and he became especially worried.  I assured him I was okay.

By the time the sun was setting, my phone was almost dead, and I had to turn it off to conserve what little battery I had left – should a real emergency arise.  Every step was a huge struggle.  My awkward walk to preserve my knee obliterated my leg strength.  I was literally stumbling over pebbles.  I began to think about Mitch and other boys with DMD.  There I was, looking at a simple dirt path, struggling to put one foot in front of another.  Though I don’t pretend to know their struggle first-hand, my struggle with leg weakness helped me empathize in new ways.  To a young boy with DMD, a simple staircase may as well be Mt. Everest. 

As I found myself finally near the bottom of the trail, I turned my phone on to check my position on the trail.  I then saw a text from my brother, “I’m on my way.”  I texted him back, “I promise I’m fine.  My legs are just really weak … I have less than a mile to go.”

At long last, with the mountain’s night breeze pressing on my skin, I looked down a dimly lit corridor of trees that led to the parking lot.  My legs were jelly and getting to the parking lot was going to be a struggle.  As I slowly exited the canopy of trees, there was a small grassy field separating the forest from the parking lot; and out of the corner of my eye, I saw my brother running at breakneck speed toward me.  I said, “Oh, Doug, you didn’t need to come back.  I was fine … my legs were just weak, that’s all.”  He insisted on carrying my pack to my truck.  Though I was exhausted, I noticed his eyes carefully studying me – looking for signs of trouble.  Even when my 40-pound backpack was relieved, I found it difficult to take a step without the help of my walking sticks.

In truth, I became emotional at the sight of my brother running toward me with a look of deep concern.  I was emotional not because I needed to be rescued – but because he cared enough to try. 

A lot happened on this hike.  I kept a sacred promise to Mitch.  I learned I can do hard things – even when I’m not prepared for them.  I was reminded that any difficult journey, including those of grief, is best traveled one step at a time.  I experienced a new level of empathy for children with muscle wasting diseases like DMD.  I learned that naive shortcuts can be dangerous.  And perhaps, most tenderly, I witnessed what brotherly loved looked like when I saw my brother running toward me at the trails end.

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Though in this photo I’m standing on the summit of a mountain … in a way, I’m also standing on a different summit – one that can’t be seen with mortal eyes.  From there, I see life differently; and in the haze of the distant horizon, I see taller mountains yet to climb.  I can reach their summits, however slowly, one step at a time.

 

 

Stories on Mothers*

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For Mother's Day, enjoy select stories on Motherhood.

ALL THAT REALLY MATTERS

I was asked by a mother from Colorado if she could make a t-shirt with Mitchell’s saying, “Be nice to each other and be glad you’re alive.  Nothing else matters.”  Their local school district dedicated today to promote kindness, respect, and peace – and this sweet family wanted to offer Mitchell’s message to the conversation. Their focus today is to have a day without hate.  A beautiful, hopeful, and timely message Mitchell’s Journey can get behind.

This sweet girl, Isabella, has known of little Mitchell’s story for more than half her life now and she’s grown attached to his messages of love, courage, and kindness.  I remember her mother sending me a video shortly after Mitchell passed away.   A much younger Isabella pointed to a beautiful array of colors in a dimly lit sky and said in the tenderest of voices, “It’s Mitchell.”  She knew Mitch loved sunrises and sunsets and wondered if he was there, somewhere in the beautiful horizon.

So, when Isabella’s mother sent me these photos last night, my eyes welled with tears of gratitude.  She even used purple and gold, Mitchell’s two favorite colors.  I felt an overwhelming sense of gratitude for good people like the Lozano family – who we’ve come to know and love. I also felt grateful for the many people on this earth who share goodness and love – for in the end, as little Mitch taught me, that’s all that really matters. 

Perhaps all of us, wherever we live, can do something today that promotes kindness, respect and peace – in memory of little Mitch and in hope for a better world.

#D3DayWithoutHate

 

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A much younger Isabella who grew up learning Mitchell's message of hope and love.

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Another Image of Isabella - promoting awareness of DMD, the disease that took our son's life.

Another Image of Isabella - promoting awareness of DMD, the disease that took our son's life.

 
 

A HEART OF GOLD

I just visited little Mitchell’s place of rest tonight and discovered a carefully sealed Ziploc bag with a 2-page handwritten letter and this bottle of gold flakes. A sweet woman from Dupont Washington, someone whose name I immediately recognized because of her support of our charity run, shared her thoughts and feelings about little Mitch.

She made reference to a story I had once written when I went to China and Mitch wanted me to bring him a gold dragon. I wasn’t able to find one and instead of being upset, he simply said that he was glad I was home. In honor of Mitch, she found this little bottle of gold flakes with an eagle on top… something reminiscent of things Mitchell loved. She left this as a token of love and respect for a little boy whose broken heart touched hers.

Sandra, if you read this, I want you to know how much your letter and this emblem touched my heart. Thank you for bringing me a measure of peace tonight.

 
 
 

LETTERS TO MY SON: THE NIGHT YOU LEFT US*

Dear Mitch,

The days leading up to your passing were surreal.  It was cold outside.  Snow everywhere.  As the world spun madly on – everything, as we knew it, was coming to an end.  It’s strange, you know, to live among a crowd of people yet feel like you’re worlds apart.  That’s how it felt when you were slipping away.  Everything on the outside seemed like a dream, oblivious to the hell on earth we were living. There we were, invisible to the world, living in the quiet of our home – and in the depths of our greatest nightmare.

With every dose of medication, you drifted further and further away.  You knew what the medicine was doing to you – and you sometimes resisted it … because you didn’t want to sleep.  You wanted to be awake as long as you could – to live as much life as possible, as long as possible.  I could almost hear it, you know … the crunch of the snow as death circled our home, every once in a while I could almost hear it gnawing and gashing at our door – violently trying to break through.  I knew it was only a matter of time before death would take you away.

Just a few months prior, I wrote a letter to our family about your heart and how your life was nearing its end.  I was careful to never let you see this letter because I didn’t want to frighten your tender heart.  In the letter I wrote:

 

 

Today Natalie and I sit with Mitch on the edge of an invisible cliff.  He can't see it, but my wife and I can - and the mouth of the abyss is yawned and inching to devour our son.  Yet, Mitchell looks out into the vast horizon unaware, and envisions a long, bright future ahead of him.  In his little mind, he is already making big plans.  He wants to build a home next to ours with a tunnel connecting our basements so he and his dad can watch movies and make popcorn.  He wants to work for his dad when he's older.  He talks about his own kids one day and how he’ll raise them like we raised him.  As he points to his vision of the future with youthful enthusiasm and a zest for life, he doesn't realize that he sits on the outermost edge and the ground from under him has crumbled away into the darkness – and his little body is hanging on by a pebble.  What Mitchell doesn't understand is the beautiful horizon he sees is only a mirage and in reality the sun is setting on his own life.

 

It was surreal to be with you on the edge of life and death.  It was different than I imagined.  More beautiful … and at the same time, more horrifying than I had a mind to know.  But your time at home was filled with love and laugher – and for that we are grateful.

Your quiet, tender ways about you made your mortality and eventual death all the more painful to witness.  How often I prayed for heaven to take me, instead of you.

Son, do you remember getting this gift?    Well, there is a profound story behind it … a tender mercy put in motion almost 6 months earlier.  I’ll tell you about that another time.  But what I want you to know is – heaven was at work preparing the way for you.  You were never alone.  Not ever.

The people in your path were meant to be there.  From your best fiend, Luke, to your school teachers and your Bishop … it was as though everything were perfectly timed … just for you.

Your final weeks at home were a mixture of heaven and hell – all rolled into one.  A beautiful agony I cannot to this day find words to describe.

There was a distinct moment I could no longer hear the crunching of the snow … the circling of death pacing around our home.  I no longer heard the pounding and gashing of death clawing at our door.  Death was in our home – and I couldn’t stop it.

Mitch, my precious child, I’ll never forget the time you wanted to be with me and play Legos.  You were too weak to sit up on your own.  You just wanted to be close … to lay on the edge of my lap and play like a little boy.  Your muscles were so weak, and you were so tired, I had to hold your head with my hand to keep it stable.  It was then I knew time had run out and whatever we had left was worth more than all the money on earth.

Time seemed to glitch.  One moment it would stretch out … other moments went by in less than a blink. 

Then, came the night you left us.  The night we said goodbye.  The night you slipped into the abyss and all became dark.  Never had I known such a darkness, borne of grief and heartache.

As your mother and I were swallowed up in sorrow, we wondered how we could live without you. There, in a spiritual pitch of night, something happened I did not expect.  As I prayed for understanding and pondered deeply on the meaning of life – almost as if against the backdrop of a darkened sky, I saw a little fleck of light.  A tender mercy that until that moment I did not have the eyes to see.  Then, the more I looked, the more I began to see – heavenly blessings that were meant for you … and some that were meant for your mom and me.

My eyes began to open.  Over the next few years, what I began to see was beautiful.  Like a heavenly constellation, these tender mercies … as if little points of light, showed that we are not alone – even in the pitch of night.

I’ll write you again, son.  I have so much to share.  I wish you were here – or me over there.

I’ve been traveling the broken road for 5 years now.  Sometimes I travel through the wilderness of grief, other times the desert – where the scorched land burns my feet.  And when I am lost, I have learned to look up and remember these points of light.  For if heaven has played such a role in our past, you see, I can have faith in what is yet to be. 

Sometimes I wonder where you are, exactly, on the far side of the sea.  Maybe you will come to visit me – in the quiet of my dreams.  And if you do, I want to know what you see.

Love,

Dad