THE NIGHT YOU LEFT US

THE NIGHT YOU LEFT US
Today and tomorrow is a sacred time for my family. Just a few short years ago my son passed away on this very evening. We have healed a great deal since then, but there is still a sacred tenderness from a wound that still bleeds. A wound that still needs to be cared for.

This is a letter I wrote my son last year. A message of love from a heartbroken father to his son whose somewhere on the far side of the sea.

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 never to 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 laughter – and for that I am 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 six 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 friend, Luke, to your school teachers and your Bishop … it was as though everything was 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 that I had to hold your head in 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 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 five 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

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

THE INVISIBLE STRING

For Valentines Day, I wanted to share another video of Mitch from the Letters to My Son series. When we took Mitch home from the hospital he wanted to share a message with our family about love - a fitting topic for this time of year.

There was a tender irony in the timing of things. His heart was failing during a holiday that celebrated matters of the heart. Though his physical heart was weak, the heart of his soul was strong. He was the giant, and me ... very much the child.

In this video, you'll see Mitch tenderly listening to a book he asked his mother read. I believe Mitch wanted us to remember its message, long after he would pass away. And in this story is a message within a message.

I'm just a regular dad who struggles to be the best he can be. I have a long way to go - yet, however much I stumble, I can feel an invisible string that connects Mitch and me.   

Here is the transcript of the video:

Dear Mitch,

I had a dream about you last night and I awoke in a panic.  In my efforts to replace my thoughts of anguish with something of peace, I remembered something about you – and it calmed my weary heart.

When it was time for you to leave the hospital, you couldn't get out of there fast enough.  You were anxious to be a little boy again and to put the labor of medicine behind you. Your mother pushed you in a wheelchair to the curb and gently helped you get seated in the car.

As we were about to leave, you said, "Mom, isn't it my turn to teach family night?" Our hearts swelled and broke at the same time – you see, you were less concerned about playing with friends and toys and more about sharing something that was on your mind and heart.

You had a lesson in mind and you wanted to share it us – and it is a lesson we’ll never forget.

Your mother said, "Yes, Mitch, it's your turn.  Do you really want to teach a lesson for family night??"  You nodded your head and said “Yes, mom.  I have it all planned out.”  With that, it was settled – you were going to share a lesson with us and we were excited to learn from you. 

What followed is best described as the longest drive of my life.  We were on a one-way trip.  There would be no more doctors, no more hospital visits to keep you healthy.  Our job was to usher you to the other side of the veil.  I worried whether we did enough to teach you – but it was realizing it was you who was here to teach me.

The next day you awoke, and you began preparations for family night.  You chose a few books to read and prepared some important talking points about what it means to love.

You asked your mother to read the books - which she did ... like she did every night.  I think you would have read them just fine, but I think you wanted her to read them so it would start to feel life was getting back to normal.

The first book you chose was called, The Invisible String … a story about a string of love you cannot see with your eyes, but you can feel with your heart.

Like that beautiful author described, there is an invisible string between you and me.  It tugs at me daily.

The look on your face said all that needed to be said.  You were listening so close to the message of the story – a story about love and the bonds that tie us together.

I couldn’t help but notice you breathing hard because your heart was weak.  A friend of mine observed, after you passed, that it was ironic that a child whose heart was broken could teach so much about love.  You loved that story because it spoke the thoughts and feelings of your heart – that no matter where we go on earth or in heaven, there will always be an invisible string that connects us.

That book will forever be treasured by our family – for as long as we live.  For like the author wrote, there is an invisible string and we will always be connected.  Looking back I wonder if that was one of the messages you wanted us to know before you left us.

You’re gone now … far from view.  But I can still feel that string tug at my heart – and it will always tug at me – for as long as I shall live.  That is the magic children have on their parents.  Now, and forever.

Love,

Dad

 


This video essay is part of a series entitled, Letters to My Son.  You can see other letters from this series by clicking the button below.

2017 YEAR IN REVIEW

Dear Friends of Mitchell's Journey,

Here is a short video that summarizes some of our accomplishments in 2017. We've done so much more than what's described here, but this will give you an idea as to where we've been and where we're headed.

Thank you for being part of this journey. In the end, Mitchell's Journey is more than the story of a little boy who died; it's about 300,000 people discovering new ways to live and love more deeply. It's about acknowledging life's hardships and finding the faith and courage to take a brave step into the unknown.

TRAVELING WELL

Today has been marked Duchenne Awareness Day - so I wanted to re-share this video in hopes of showing the impact DMD has on children and families.

Though the scope of Mitchell's Journey goes beyond the medical condition of DMD as it contemplates the human conditions of faith, hope, and healing, I want to do my part to raise awareness. I want people to know what took my little boy away from me.

A life of true significance doesn’t say, “Here I am, look at me!” but rather, “There you are, how can I help?”
— Christopher M. Jones | Mitchell's Journey

In the most unexpected ways, my heart is especially tender today. Tender because I miss my son and tender for the many families who fight for their children still living.

We will all die at some point - that much is certain. But how well we live between now and then ... how we help others along their journey, is what makes our lives significant. Little Mitch inspires me to live a life of quiet significance.

A life of true significance doesn't say, "Here I am, look at me!" but rather, "There you are, how can I help?"

May we all find a way to not just travel through life, but travel well.

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Recently I was asked to serve on the board of Parent Project Muscular Dystrophy, the same group that tried to save my son's life and who works tirelessly to unlock the riddle of DMD. I honor that organization and hope to serve them well - to help put a face to a fatal illness that broke my heart and give hope to those who face that same fate.

https://www.facebook.com/parentprojectmd
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