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.

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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

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“This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. ”

— Christopher M. Jones | Mitchell's Journey

I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.

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“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.

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Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.

I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.

On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.

Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.

The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.

I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.” 

There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true. 

But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.

I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.