THE ROAD IS LONG

With trembling hands and tears in her eyes, Natalie tore open an envelope that contained documents from the State of Utah. We knew exactly what it was before we opened the envelope – but that didn’t make this experience any easier. My sweet wife gasped for air as she poured over the contents of our son’s death certificate. I gave her space and cried, too. It occurred to me at this tender moment that when it comes to grief, the road is long. 

While everyone in our lives (at the time) had moved on … the images of Mitchell’s funeral faded and become a distant memory … my tender wife and I were still dealing with the harsh realities of death. It took well over a year before all of the institutions stopped sending us material about account closures, insurance adjustments, school documents, social security cancellations, and more. At least, then, the mailbox stopped reminding us of our waking nightmare. 

When it comes to the death of a child, the road of grief is made long in many ways. I’ve observed some kind and well-meaning people who post brave poems and other prose that suggest, because our souls are immortal, death is nothing at all. It is almost as if some wave a banner of liberty that says, “You see, you can stop hurting now.” But that doesn’t assuage sorrow. Some suggest that because they’ve felt peace that “you should, too.” Others might share the notion that our loved ones wouldn’t want us to be sad – that we should just be happy. (A guilt strategy that is as delirious as it is insensitive.) Others tell us our loved ones have merely gone to the next room and that we ought not to hurt so much because they are near. Though our loved ones may be near in a spiritual sense, from time-to-time, they may as well be on the other side of the universe – for there is no mortal door to walk through, no visiting hours, and no rest for weary hearts that wish for one more of anything. 

There are a host of other things people do and share that would seem to ignore, deny or marginalize the emotional devastation of death. I do believe that most people only mean to help, unaware how their actions may complicate the sufferer's healing process. I am here to say that death, especially the death of a child, is most significant. It is a pain without equal. And, when others would suggest it’s time to move on or that death is a small thing in comparison to eternal things, they would seem to rob the sufferer the dignity of grief. Sometimes, without meaning to, they diminish the realities of loss and sorrow. The sufferer then tries to find ways to carry their sorrows in silence, often concealing their sorrows from view. There grief continues to live, buried like a cancer that sometimes becomes malignant. They hide their pain from view so they can reduce the criticisms of those who haven’t the slightest clue. Yet, the sufferer still hurts in unimaginable ways. They will hurt for a long, long time … long after the memory of funerals fade. Long after their surviving children have children. Grief remains.

Almost 10 years ago I visited with a dear friend whose father was about to pass away from old age. This father and great-great grandfather lost a child when he was a young parent. For 60+ years, he carried the weight of grief. Yes, he loved his children and grandchildren and lived a full life – but he carried grief, too. When he was on his own death bed I was invited to interview him so that his life stories might be preserved for generations to come. That interview was a tender exchange and there were feelings of love, gratitude and sorrow. This old man, whose tired body was about to find rest, was charming and kind, funny and humble. I marveled at this ancient soul made visible and sensed there wasn’t enough film on earth to capture his wisdom and life experience – however much I wanted to capture it.

Among the most poignant things he said was, “I can’t wait to see my wife again.” He then continued to say, with tears in his eyes, he was most excited to see his fallen child. For it had been so, so long. He cried and I cried with him. After all those years, he still felt grief. On the edge of death, he still sorrowed over his child’s passing almost a generation ago. 

I walked out of that home a changed man. I sat in my car at the edge of his driveway and in the cover of night, I wept for him. That was my first glimpse that the road of grief is long.

That road of grief is long for a reason because, among other things, it teaches empathy. At least to me, empathy is one of the richest of all relationship currencies – both because it is so powerful and because it is so rare. It is an outgrowth of love and charity, of understanding and respect for others. It is to see and feel what others see and feel – a selfless act of caring with no thought of ourselves. One cannot feign empathy with hollow words, mechanical gestures or rehearsed behaviors. Empathy is a conversation between souls that is felt more than heard.

I do not write of grief today because I’m stuck in sorrow. To the contrary, I am experiencing more joy and sustained peace than I have ever felt since I lost my son. I suppose I share these entries like an early explorer might journal their findings through undiscovered country. I see beauty and horror, peace and sorrow; I see gardens of new life and wastelands with barren hills. I see beautiful, tall vistas that stretch into the heavens and valleys that reach deep in the shadows of death. 

The road is long - but it is not all perilous. This much I know. One day I will be like that old man at whose bedside I sat. Like him, I will still have many tears for little Mitch. Anymore, I seem to identify with the lyrics of an old English folk song, “Though hard to you this journey may appear, grace shall be as your day.” Until that heavenly moment, with gratitude and joy, I will wend my way.

 

PRECIOUS MOTHER

I remember driving to the cemetery after work one day only to find my sweet wife knelt quietly at the head of my son’s place of rest. The grass was still mending from the funeral and you could see the painful outline of where exactly he was buried. I never imagined grass could be so brutal.

My dear wife, you precious mother … I love you more than any other. Yes, I love our children as much, too … for they came to life from me and you. But, my love, you are where it started: my heart, my life, and our son departed. My dear wife, you precious mother … because of you, Mitch was blessed above all others.
— Christopher M. Jones | Mitchell's Journey

I reverently approached my best friend but gave her space – for I saw her suffering an agony only a mother who’s lost a child can know. While I carry a father’s sorrow, which is heavier than anything I have ever known, I reverence my wife’s grief differently than my own. 

Mitch had such a tender relationship with his mom. He often called her “Mommy-Lommie” as a term of endearment. He would always tell me how he thought his mother was the kindest, most beautiful lady on earth. “Don’t you just love Mommy?” Mitch would say with great feeling. 

I have tender photos that I’ll share at a later time that show his sweet expression whenever Mitch was in her arms. This little boy loved his mom. And she loved him.

Mother’s day is around the corner and I can’t help but turn my heart to my dear wife. I struggle to know what I might do to show her how much I love and honor her. Everything I can think of falls short of what I feel. I know the gift she really wants I cannot give. Though I would gladly take my son’s place, I cannot. How that pains me so.

Our grief journey so far has been more complex than I ever imagined. Perhaps that is one of the reasons grief is so difficult to process … precisely because it is so complex. If it were simple, it might be easier. But it is not simple: grief is a tangled web of wanting, longing and loving something you can no longer hold. It is a briar patch of self-doubt, what if’s, and wonderings. It is the isolation of being misunderstood or simply not understood. It is learning to breathe in an emptiness that suffocates.

As difficult as it’s been, grief has also been a beautiful teacher. It has taught me how to be more compassionate and patient. It has taught me to better appreciate light – having experienced pitch darkness. Grief has taught me how to talk to my Father as a child might talk to a parent. Most beautiful of all is seeing those I love discover heavenly gems.

It wasn't long ago I was asked to speak to a group of women about the extraordinary influence they can have in the lives of others. The night before I was to speak to this group Natalie and I were talking about our journey so far. She looked me in the eyes and said, “Chris, I remember feeling betrayed and saying to God, ‘I tried to do everything you asked and THIS is what I get?’” Natalie paused a moment, with tears in her eyes she continued, “Then it occurred to me: this is my price to know God.” Tears filled my eyes and my heart filled with peace as I felt the truth of her words. 

I have marveled at the transformation I have seen in my wife over the last 2 years. I can see the hand of God shaping her, tenderly and sometimes painfully, into something beautiful, not bitter. Yes, her heart is broken and tender – but it has become wiser and more caring. Through her suffering, she has come to know her Father in deeper ways. 

My dear wife, you precious mother … I love you more than any other. Yes, I love our children as much, too … for they came to life from me and you. But, my love, you are where it started: my heart, my life, and our son departed. My dear wife, you precious mother … because of you, Mitch was blessed above all others.

BATTLES WORTH FIGHTING

Mitchell’s last Nerf gun battle lasted 2 minutes. Just as his war game was beginning to unfold, he leaned against the wall about to pass out while taking very shallow breaths. With a whisper in his ear, “I love you”, Natalie lifted our son in her arms and gently took him back to his room. Mitchell looked off into the distance with his arms softly wrapped around his mom. 

We knew there wasn't much time to play. So, just prior to the Nerf battle, Natalie made haste and quickly tore a piece of fabric from one of her dresses to make a headband – to show little Mitch she was “all in”. 

As I followed them back to Mitchell’s room, my heart swelled with a love and sadness that to this day I cannot find words to describe. In her arms was our dying son who just wanted to be a little boy. 

Mitchell would never leave his room alive.

During his time at home Mitchell received hand-written letters and packages from all manner of military officers who were serving all over the world – some in hostile theatres. They had been following Mitch and wanted him to know they were inspired by his courage and strength. Some even said it was for him they fought. One of the tender ironies was Mitchell loved the military and was so touched they would even think to write him. Call of Duty was one of his favorite games and, for a 10 year old, he had a brilliant tactical mind. Upon reading some of these letters from Marines, Mitchell would ask me “Dad, do they really think I’m strong?” I turned to my son and said, “Son, in every way that matters you are as strong as they get, and I am so proud of you.” His brow furrowed as he began to think deeply on my words.

Mitchell was so tired and listless at the time, but I continued, “Let me tell you why I think you’re as strong as people get: real strength is doing the right thing when nobody is looking … and you have always done that. You are trustworthy and obedient and good. I am so proud to call you my son. Strength, the kind of strength that matters, isn't found in the body, but in the soul. And Mitch, you have a very strong soul. I love you so much.” I kissed his forehead and he lifted his arm around my neck to hug. If only I could have frozen time …

Within 24 hours of this photo little Mitch would gaze out his window for the last time and contemplate his life and accept the harsh reality of his death. This young warrior, who was mortally wounded by an invisible enemy, demonstrated one of the highest forms of strength and selflessness by telling his mom he was going to be okay. 

Having lost my son to a biological enemy that knows no ransom, has no mercy, and offers no remission … I have decided to take up arms against this enemy of the body: to fight Duchenne Muscular Dystrophy with all that I am. This is a battle worth fighting because little boys like mine deserve to live - and any family is at risk. 

I have been taught that if we turn to God, weak things can become strong things; that God gives us weaknesses so we can become humble, and if we turn to Him in our weaknesses, God will make weak things become strong things. That is one of the reasons we are given hardships in this life. Today, I have more weaknesses than I have strengths but I hope, in time, I can become as strong as my little son. 

There have been agonizing moments, while stumbling in the pitch darkness of grief and loss that my soul has cried out “if anyone deserved to live, it was my son”, and that I should have been taken instead. Then a whisper to my soul reminded me death is not punishment, but rather a transition from one state of being to another. I was reminded of an 18th Century philosopher who said “We are not human beings having a spiritual experience; we are spiritual beings having a human experience.” 

The purpose of life: a masterfully calculated landscape of hardship, happiness and putting trust in things that are invisible to the eye but discerned spiritually … all in an effort to refine our souls. And while the world seems in a constant state of unrest and war … I find myself ever more concerned about the quiet battles of the soul … the kind of battles that destroy us from within. Those, too, are battles worth fighting – and fighting well.

TRADING REGRET FOR RESOLVE

Every-so-often I drive by the mortuary and am reminded of the moment I saw little Mitch for the first time after he passed away. When we first entered the room we saw him lying on a table, lifeless and cold on the far end of a dimly lit room. The scene was something from a nightmare I was afraid to entertain, even in my mind. I struggled to find my breath as I swallowed the lump-turned-basketball in my throat. I stayed back so Natalie could have her time with Mitch – for I knew a mother’s love was sacred and different from mine. 

When it was my turn to be with Mitch my heart tumbled into a deep abyss and it seemed for a moment my soul was certain to drown in the darkest waters. I wished so badly to wake my son that I might hold him and tell him I loved him – but he was gone. Tears streamed down my neck this day, and for many months after. I had just entered a phase of grief where I wept every single day for almost 2 years. I didn't cry. I wept.

So when I drive by that mortuary or simply reflect upon my own experience with loss I am reminded of the fragility of life. Not that we die – for I have seen plenty of death in my life and I don’t need to be reminded that life is perishable. Rather, I think about how easy it is to die a little on the inside, long before our bodies perish. We die from addiction and distraction, grief and anger, and a myriad of other things that would rob us; stuff that will take life away from life. 

I don’t post on Mitchell’s Journey because I’m stuck in grief or that I fixate on death and sorrow. I am just trying to examine my life and discover ways to become truly alive.

I wish I could say I lived a life of no regret – but I haven’t. I don’t think it’s possible to live such a life because we are human and flawed. In fact, I am wary of the man or woman who says they lived a life of no regrets because such a tale is born of fiction and self-deception. 

Regret is an unavoidable human condition. It is the wanting for a different outcome and the pain we cannot make it so. Regret is a measure of grief. It is part of grief. Regret is part of being human. Yet, I don’t believe, being human, the purpose of life is to cling to regret, guilt or self-loathing. Life is hard enough and I have come to believe it is well enough to do your best and forget the rest. 

Do I wish I would have been different when Mitch was with me? Absolutely. Do I have regrets? I have many. But I am learning to forge those regrets in the fiery furnace of sorrow and build a new resolve that is sharper and stronger than I have ever known. 

Each time I meditate and write about grief or an aspect of my son’s life and death, I am learning to trade regret for resolve. 

One day, when I look back from that place beyond the hills, I know I will be glad I lived the life I lived. Not because I didn't make mistakes, but because I learned to turn regret into resolve. A resolve that is teaching me how to truly live. A resolve that is leading me home.

On those days I am especially weary in grief, stumbling over pebbles and struggling to breathe … I can hear a loving whisper, “Rise my son, for your time is not yet done. You aren't learning how to walk, but rather how to run.”

MY WILDERNESS

As a young boy I used to get lost in the back woods of Edina, Minnesota. The wilderness was thick with all manner of vegetation, rocks and hills – and because of the very nature of nature you couldn't see very far. And when fog settled, you could see almost nothing. 

Being lost as a young child reminds me of the landscapes of my life. Sometimes I sit upon a vista with clear skies and can see far into the horizon. Other times I am scaling my Everest – afraid I might fall. Still, other times I am traveling through a wilderness of hardship where the fog of the unknown makes seeing what’s ahead almost impossible. 

Regardless of the landscape upon which I journey, I have learned to travel by faith. That doesn't mean to travel blind or dumb, but to learn to see with my other eyes and hear with my other ears. There is a difference, and it is significant.

As Mitch started to slip away, I found myself descending into a dark wilderness wherein I could see very little. The further we traveled into this wilderness of grief and sorrow the more difficult the terrain and the thicker the fog. I would hold my son’s face and tell him how much he meant to me. I would kiss and hug him and try to assure him – but inside I was terrified of losing him. I love him so very much. With each minute, each day, the wilderness became ever dark and perplexing. I have never known a wilderness such as this.

My wife came into my office today with tears in her eyes and said, “I know it’s officially tomorrow night (the morning of March 2nd) that Mitch passed away, but the day was on a Friday last year. Today is Friday.” Tears filled my eyes, too. I realized then I am still navigating the wilderness of grief. And what a wilderness it is… 

The other day I stumbled upon a journal entry I wrote when I was 19 years old. I had all but forgotten about the dream – but somehow I had the presence of mind to write it down over 20 years ago. In my dream I was travelling in a forest heading to some place important, but I couldn't put my finger on where. I also had a wife and children but I couldn't see their faces and I didn't know their numbers, yet I knew they belonged to me and me them. Each of them was carrying picture frames. As we made our journey through the thick forest, at some point I realized someone was missing and I began to desperately search for my child. I was in a panic, and then my dream ended.

As I read my journal entry I lost my breath. I am now beginning to understand the meaning of that dream so many years later - and I can’t help but contemplate what God was trying to tell me about my future. He spoke to me, and I listened … and I wrote it down… but I didn't understand it. If there is one thing I've learned in my own journey; it is one thing to receive a personal revelation (or answer, or warning) but quite another to understand it. 

I have discovered that while navigating my wilderness I must learn to rely on my spiritual hearing, not just spiritual sight. And learning to hear is a delicate and personal thing – borne of personal acquaintance. 

Suppose I told you outside there were 2,000 mothers – one of which was mine. And say I blindfold you and told you to find her. I could describe her to you; I might say she’s 5.5, blonde short hair, a beautiful smile and kind voice. If I sent you out there to find her ---- you couldn't do it. Yet if you were to blindfold me I could find her in minutes. Why? Because I know her voice. So it is with God. 

I am still navigating the wilderness of grief - almost as if blindfolded. But I have ears to hear. And while I may stumble and fall to my bruised knees in sorrow, I will get up and follow that voice that whispers ever so gently. A voice that is so quiet that if I’m preoccupied, I may not hear it at all. 

One day, at the end of my wilderness, when I have learned what I must, I know I will see my son again. Only this time I will hold Mitchell’s face not in sorrow but in deep relief … for I will have closed the loop on that dream I had so many years ago; I will have found my son who was lost from my sight. And I will thank my wilderness for teaching me to hear my Father’s voice … a voice that is leading me home. I hear Him.

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 which caused his chest to protrude; he looked deformed and it was disturbing to see. The candle of life was dim and flickering by the winds of change. I could feel the coldness of death lapping at my feet and I was terrified. 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. Fatigue had taken hold of me ... I was so very tired. 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 so fought valiantly to live; this little boy of ours … who always wanted to make us happy … I wanted him to know that we loved him and that all would be well. No sooner had I drifted back to sleep Natalie had 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. 

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


AT LEAST I’M ALIVE

Little Mitch was so cute this night. He always loved to take baths … I think in part because he was able to float in the water and that helped him feel a little relief from the relentless tug of gravity. As his muscles grew weaker from DMD, any rest was a good rest. 

I always loved sitting with him, playing with toys on the edge of the tub. Whenever I spent time with Mitch or my other boys, the little boy in me would emerge and we would get lost in imagination. I could care less about a football game or stretching my legs to the news … my world was (and remains) my family. In an instant the bath was no longer a tub, but an ocean with an ever changing landscape of bubbly mountains. The faucet became a mammoth waterfall and the various bottles of shampoo, towers to a soapy fortress. Our adventures were epic and endless.

I'll never forget the sound of my son’s voice pointing to the tender spot around his PICC line saying, “Dad, I wish I didn't have to have this.” He paused a moment, catching his short breath and said, “Well … at least I’m alive.” I smiled softly as my eyes gushed with tears and then ran down my face. I kissed his forehead and quickly excused myself, then slid my back down the hall and wept like a child. 

Little Mitch was just glad to be alive yet I found myself wanting for death because losing him hurt so much. I pleaded that night to my Father; I cried out like a child and wet my pillows with my tears. That night, and endless nights since, I visited the darkest parts of the human soul. 

Those words will haunt me the remainder of my days: “Well, at least I'm alive.” Mitchell’s words were a declaration of gratitude for what little he had, not a complaint about what he didn’t have. If ever I’m tempted to complain or get discouraged, I will remember those fateful words of my son … “At least I'm alive.”

Some might ask why I continue to post stories such as this … stories wrought with profound sorrow and loss. It begs the larger question as to whether revisiting painful moments like this agitates a wound that may otherwise heal if left untouched. But, what does it mean to not touch the wound?

The truth about grief, especially the loss of a child, is you can never not touch the wound. That is a fiction, in Shakespeare’s words, “told by an idiot.” Not a day passes I don't think of little Mitch. Were you to ask any parent who lost a child, no matter how many years have passed, you will most likely hear them say what I just said; that not a day passes they don’t think about their lost child. Not a single day. 

Every day, those who grieve the loss of a child touch the wound. It is normal. It is unavoidable. It is part of healing.

I think the key to processing grief isn't about not touching the wound … pretending it doesn't exist. That’s impossible. Rather, it is how we touch and dress the wound that matters. I can say with confidence, every day I'm healing on the inside. Yes, my heart is still broken and tears flow regularly – but I'm not as broken as I was a year ago and I'm grateful for that. Make no mistake, I'm still broken … broken in ways that are deep and rending and will take a great deal of time to mend. But I'm mending … and guess that’s the point of healing. Progress, however fast or slow, is progress.

At least for me, part of my own grief journey is journaling. I don't write to fixate on sorrow. Instead, I write to process these moments in my own mind and heart and determine what meaning they have for me. With each painful moment I address the pain of my wound, then I dress my wound with meaning and context. That, with Heaven’s help, is how I choose to heal. 

Though the pain of losing a child is so great at times I may wish for death, I seem to always come back to the thing my son figured out at the age of ten, “At least I'm alive.” 

I am alive … and I intend to make the most of it.