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

IN TIME

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.

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.

BUT IF NOT

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.

THE SUN WILL RISE

As the mortuary employees rolled my son to their truck I began to panic. 

I had just spoken with Mitch about 24 hours earlier and I was confused how he could be gone so quickly. Though my mind knew better, my heart worried about my little boy being alone and scared in the back of their vehicle. After all, these people were strangers to Mitch and to me. They were taking my little twin away and I prayed to God that He would take my life that very moment if it meant my son might wake and live. I even prayed that I might suffer greatly, even to be thrown into the depths of hell itself, if that were the price required so my son might come back to life. 

Though I have stumbled, blinded by the pitch of night, my Father taught me to look heavenward for those little flecks of light. Those tender mercies that show me we are not alone – but instead, guided hands unseen down paths unknown.
— Christopher M. Jones | Mitchell's Journey


This was the same patio upon which Mitch and I sat many summer evenings and watched storms roll across the valley. The same place Mitch would tuck himself under my arm and watch the sun set while eating Popsicles. This was the same place he cuddled with his mom as she rocked him and faithfully read children’s books. This view, once a place of peace and beauty, had suddenly become horrifying beyond all description. 
 

Had Mitch not passed away that morning, he would have awakened within hours of this photo and dutifully gone about his chores without ever being asked or reminded. Afterward, he would have wanted to play Minecraft and have Nerf gun wars and maybe work on a Lego project for a while. Mitch would have wanted to cuddle and talk, draw pictures and play with friends. He would have continued to be a quiet little boy who loved his life and loved his family. 

The sun was beginning to rise as they rolled little Mitch away … and though night was retreating from the morning sun, the true darkness of grief was yet upon us. My mind became a kaleidoscope of terrifying thoughts and emotions. 

I wept so hard that morning I thought I broke a rib. 

For the next two years, almost daily, I would experience moments of horrific grief so deep I would wish for death. A great many of my earlier entries on Mitchell’s Journey, just after his passing, were born of deep sorrow and a longing to make sense of suffering. Peace would come and go like the tide. Sometimes after thundering waves of grief would thrash me about I would feel moments of sweet relief. Despite those moments of peace, the waves of grief kept coming and getting stronger. I didn't realize those waves were but a prelude to the super-storms of sorrow I would soon experience. For a season, grief grew deeper, longer and darker than I had a mind to imagine.

That’s what spectators to grief often misunderstand. They think the hard part is passed after our children die. What they don’t realize is the aftermath of loss is infinitely more difficult than everything leading up to and including death itself. Combined. You can write those words down in permanent marker. That was the easy stuff. The hard stuff doesn't come days or weeks after the passing of a child … but months and years later. 

So, as I watched this horror show before my eyes I wondered if the night in my heart would ever give way to lighter days. Such a thing seemed like a dream, a universe away.

I am just entering my third year of grief and I have three words to say about tidal waves and darkness: it will pass. I know this because I have experienced it.

Don’t get me wrong; I’m not done with grief. Rather, grief isn't done with me. I am still healing and probably always will. In fact, just the other day I got in my car and out of nowhere I started gasping for air, afraid I might suffocate as I wept for my son. Those unexpected moments of grief come crashing down on me like a tidal wave and I have just learned to let it happen – because I have discovered those moments pass, too.

I have discovered happiness again. Not the illusion of happiness, but real, actual happiness. It isn't found in denial. It isn't found in things. It is found in discovering purpose and meaning. Though I ache deeply for my son, and grieve for him daily, I think I’m beginning to understand a little about why Mitch had to suffer the way he did. 

Though I have found happiness and am grateful for increasingly longer moments of peace and tranquility, I know enough about my own grief journey to realize there are storms of sorrow yet ahead. There will be tidal waves of grief the likes of which I cannot describe … I only know how soul crushing they feel. 

To those who are just beginning their journey with grief; I promise you, as impossible as it sounds … the pain will ease and you’ll begin to find peace. Though I have stumbled, blinded by the pitch of night, my Father taught me to look heavenward for those little flecks of light. Those tender mercies that show me we are not alone – but instead, guided hands unseen down paths unknown.

To my dear friends here who wander, deep in the shadows of death and sorrow, I promise you the sun will rise again on some tomorrow.

 
 

BABIES MADE OF SAND (part 2)

Before my son started to slip into oblivion I wrote in my journal “To have a child with DMD is to cradle a baby made of sand. No matter how hard we try to keep them together, they break apart and slip through our fingers. There is no stopping it.” 

I agonized that my son was slipping through my fingers and I couldn't keep him together. In his final days I could scarcely hold a handful of him – there was little of him left and he was blowing away by the winds of change.

As long as I can remember I always wanted to be a father; I loved children and I couldn't wait to have my own. Only when my wife and I started our own family did I begin to understand the depths of love – how deep, wondrous and beautiful the journey of parenting can be. Once I began to hold my babies in my arms, when I learned how to dry their tears and carry their sorrows, to make them giggle and help them take steps into a brave new world … only then did I begin to understand, perhaps only on a primordial level, what our Father feels about us. He is, after all, our Dad. 

While I did all that I could to protect my children from harm, I also understood I couldn't always rescue them – that sometimes they needed to work out their own troubles, even if I stood nearby should they needed a helping hand or words of encouragement. Were I to rescue my children from the little troubles they would not learn how to solve problems and soon find themselves in much bigger trouble. A delicate balance parenting is. Natalie and I understood that in our struggle are we made strong – and insulating our children from struggle doesn't help them, it hurts them in the long run. I know our Father understands this better than anyone. He didn't send us here to build cities, riches and other things – He sent us here to build our souls by the sweat of our brow and the toils of our heart. All that is material is simply immaterial, in the end. 

So there I sat at my son’s bedside with tears running down my neck – holding my baby made of sand. I, too, was very much a child at heart and looked to my Father for guidance. I knew life was meant to be a struggle of the soul but, being human and a frightened child, I still prayed, even begged, He would somehow rescue my son and family from such a sorrow. But if not, I trusted the wisdom of my Father, and on bended and broken knees I followed Him. 

Although I always longed to be a parent, I never knew fatherhood would come to me at such a heavy price. There have been times my sorrows have been so deep that I wished for death, for such would have been a sweet relief. Yet in my sorrows and in my grief, I have learned about our Father and His unspeakable peace. It doesn't always stay and sometimes it’s rather brief … just long enough to let me know my Father is standing nearby, should I need His helping hand and some heavenly relief.

I am grateful for a Father, who is so much wiser than I; who knows when not to rescue and stand quietly nearby. I am grateful for a Tutor of the soul so infinitely wise; who knows it’s in our struggle we learn to see with heaven’s eyes.

As bewildering as this journey has been, I wouldn't trade my time with Mitch for all the peace of mind or riches of men. Though I stumble and often weep, I will bear the burden of grief with gladness … for Mitch was mine to love and to keep. 

When I think back on my baby made of sand, I realize at once, such is the fate of man. There will come a day I will see my son again, no longer grains of sand, but a soul immortal and beautiful … masterfully shaped by our Father’s hand.

NIGHTFALL

Night had fallen, and so had our hopes for one more day. My weary, tattered son lay in his bed unable to move and barely breathing. Within the last 12 hours his heart had greatly enlarged - causing his chest to protrude. He looked deformed. It was disturbing to see. The candle of life was dim and flickering by the winds of change. Even though night had long since fallen, more than the sky was dark. I had dozed off on the floor of Mitchell's room, next to my wife. As I was beginning to drift into a deep sleep I awoke with a distinct impression to tuck my son in - something he asked me to do every night.

"Hey Mitch ..." I said in a soft whisper, "I'm tucking you in, just as you like it. I love you son, so very much. Don't be afraid; remember what we taught you. Everything is going to be okay." 

I'm told that hearing is the last thing to go for those who are dying. For reasons I have earlier posted I know my son heard me. Those were the last words Mitch heard in mortality. Within 30 minutes of that gentle whisper and kiss on his face, my precious little boy passed away. I hope he wasn't scared. I hope.

We've also been told that children who are about to pass away often wait for their parents to leave the room or they linger for permission to go because they don't want to hurt or disappoint. Knowing this, I wanted my weary son, who fought valiantly to live; who always wanted to make us happy to know that we loved him and that all would be well. No sooner had I drifted back to sleep that Natalie got up from the floor to administer Mitchell's medicine, which he was now receiving every two hours. I'll never forget the sound of Natalie's voice. Her words pierced the silence of the room like a samurai sword through paper: .... "Chris." Suddenly, with the thunder of 1 million exploding suns, I awoke that instant only to see a mother's face that looked confused, scared and deeply bereft. I got up from the floor by Mitchell's bed and placed my hand on his chest. Nothing. Our precious son, our broken baby, was gone. 

My sweet wife sat by her little boy, sometimes draping over him as if to comfort him, holding his lifeless hand. She stayed there and wept for a few hours. She never left him - and deep inside she wished he had never left her. The look of anguish on my tender wife's face broke my heart. Baby Marlie curled around Mitchell's head earlier that evening as if to comfort him and never left his side. Mitch loved his puppy and always found her a source of comfort. 

We could scarcely believe our eyes. Lying on Mitchell's bed was the form of a little boy we raised since birth and loved with all of our hearts. His body was still warm and it seemed as if we could just shake him a little as if to wake him from a deep sleep and that all would be well. But Mitch had fallen into a sleep from whence there is no return.

As each hour passed we could feel his arms and legs get colder. Soon, only the center of his chest was warm and it was cooling quickly. Then his body started to change. At about 3:45 AM I called the funeral home to pick him up and they were at our home within an hour. I asked them to hurry because I wasn't sure I could watch my son's body continue down the path it was heading.

Processing the death of your child is something of a bi-polar experience taken to the greatest extremes. One moment you feel peace then suddenly you confront feelings of horror – the likes of which you've never known.

With all the lip service we give our religious beliefs, there is nothing so exacting as to see your child die and then to peer into the dark abyss of death. I have been taught that: "Faith, to be faith, must go into the unknown ... must walk to the edge of the light, then a few steps into the darkness." My son's journey, Mitchell's Journey, has forced my wife and I to step into the darkness. A darkness that is as heavy as it is pitch.

Yet, I've discovered something in all this darkness. Once I allowed my spiritual eyes to adjust and look upward, I started to see the stars. Against the backdrop of all that is black and frightening I can see little flecks of light, tender mercies that were always there but I didn't have eyes to see them. And the accumulation of these tender mercies present themselves like heavenly constellations so I can find my way. If I look down or to the side, all I see is darkness. Like ancient navigators who looked to the heavens for bearing I can see the fingerprint of God in all that has happened and I now have a sense of direction. I know we're not alone.

To be clear, it is still nightfall and my heart is heavy with a sinking sorrow. There are days that are blacker than black and the waves of grief threaten to pull me under. But when I look to the heavens I can see. 

I can see.