WHY WE SUFFER

IMG_1550.JPG

As Mitch began to drift away, I would look at him with deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to someplace safe. A place like the children’s books we often read to him – a place of hope and happiness, joy and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day, and I was greatly pained therewith. When I took this photo I had the distinct impression we were no longer counting the days, but the hours.

I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, “I am so sorry this is happening, son. You are so brave. I think sometimes God sends us the little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you.” Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.

While Mitch slept, I wept.

I wept so hard the bed was shaking, and I worried I would wake him. The grief I knew then was but a foretaste of the grief to come. It turns out death was the easy part … for I'd soon experience a kind of bewilderment, emptiness and longing that would become a more painful hell.

I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead, I learned to turn my ear heavenward; to listen for secrets to the soul and learn what I was meant to learn. Too often people get hung up on asking the wrong questions – and therefore get no answers. They ask “why would God do this?” When we hurt, it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we’re being singled out or treated unfairly. But the last time I checked, life isn't fair, and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of afflictions. In the few minutes it might take to shake our fist and complain about our own lives, hundreds of people will have passed from this life to the next, and a great many more will mourn their absence. The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.

At least for me, I've come to discover suffering and sorrow are an important part of life’s learnings. Any more I worry less about the origins of my sorrows – for what difference would it make? Surely God isn’t caught off guard or surprised by the events in our lives. Whether He’s the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion … He could change the course of our sorrows if He wanted to. The fact He often doesn't sends a compelling message. The question I ask myself is, “Am I listening?”

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.
— Christopher M. Jones | Mitchell's Journey

So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description that left my soul weary, bruised and weak. I didn't want my little boy to go, for he was my tender son and I loved him so. Though I prayed mightily for his safe return, the answer I received was “No, my son, for there are things you must learn.”

Thus began my journey with grief, down a bewildering path in search of relief. And though I still hear the deafening sound of death’s terrible toll, I have come to understand our mortal bodies are but clothing to the soul.

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.

MySonLives_J34A9323_Second Pass3_TIFF_NO TEXT.jpg


SOME THINGS ARE FOREVER

I had lunch with an old friend recently and he shared a sacred moment he had during a time of deep personal struggle. I grabbed a napkin and quickly wrote his words down. He said, “I wept because I knew it wouldn’t last.” I was struck by the haunting truth of those words. Indeed, moments never last. Health and youthful beauty fade, over time. Even life doesn’t last. If my son’s journey through life and death has taught me anything, it’s that virtually everything ends, in the end. At the same time, I’ve discovered some things are forever.

... life doesn’t need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.
— Christopher M. Jones | Mitchell's Journey

This photo was taken during my Camelot years. Life was kind and my cup was running over in so many ways. Even still, I was a conscientious photo-taker because in my heart, I knew deep down nothing would last – that everything was changing. I realized early that photos would become my time machine. My journal. My compass.

On this day, young Mitch and Ethan were walking out of a movie theater giggling about the movie they just saw. I couldn’t help but capture this brotherly moment. I loved listening to their young minds at work. They were so funny, and they reminded me the world can still be innocent and kind. At this point in his life, Mitch had enough muscle strength to walk to the car, which was parked nearby, but he couldn’t go much further than that.

The way Mitch walked seemed almost ordinary to the layperson; but to those who knew DMD, his way of walking was unmistakable … a kind of flashing neon sign signaling the biological catastrophe that was slowly unfolding in his body.

When I look at this image, I can almost hear my boys giggling. I’m grateful for photos like this because I get to go back in time … to moments like this. I get to say to myself, “I’m grateful my children happened.”

About a month ago I had a heartfelt conversation with Ethan, who is almost 19 years old. He looks nothing like does in this photo; his boyish features have all but faded and given way to the likeness of a grown man. Over the last few years, Ethan has grown into a stalwart soul who is deep, insightful, talented, kind-hearted, and in search of meaning and purpose. I am so proud of him – not because of what appears on the outside, but for what lives inside.

As we sat on the couch, he began opening his heart to me. I could tell he wanted to talk. I sensed grief was just beneath the surface of his soft smile. I asked him, “What’s on your mind, son?” Then, his eyes welled, his voice cracked – and the flood gates opened. He told me how much he missed Mitch – even after all these years. I was reminded of the tender bond these brothers shared. They were the best of friends – and that is a space I hold sacred and with a reverent heart.

While part of Ethan ached to have some do-overs with Mitch– more importantly, he wanted his life and future to matter. Deep down, he wanted to honor his brother’s short life by the way he lived his. Ethan’s emotions were a mixture of looking back, being present, and thinking about his future. Just as it should be.

As I listened to Ethan’s searching heart, I was reminded that some things are forever. The love between siblings can be one of them. I am sure during Ethan’s final hours, many years from now, long after I’m gone ... when old age has taken its toll, he will look back on his life and still remember his brother with fondness.

That is one thing I admire about Ethan; he’s not bitter that his brother was taken from him – but instead, he’s grateful their lives were woven together – even if only for a short season. He's discovered life doesn't need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.

YOU CAN’T GO HOME AGAIN

As far back as I can remember, Natalie and I always enjoyed having people at our home; we enjoyed serving those we love with a great meal, and we enjoyed good conversation even more. On this day, we had extended family over for a BBQ. It was a hot, muggy afternoon. The cousins were busy laughing in the back yard playing on an inflatable water slide. Little Mitch didn’t have a lot of muscle strength to do what the other kids were doing, so he stayed behind and wanted to be near me, which I loved.

I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new.
— Christopher M. Jones | Mitchell's Journey

I was busy preparing our meal on the grill. My tripod and camera were on-the-ready to capture any moment that caught my eye. Little Mitch asked if he could wear one of my favorite hats that had artificial grey hair sprouting in every direction from the top. At the time, I didn’t have any grey hair to speak of, and it was one of my favorite hats. Since I’ve lost Mitch, I have grown quite a bit of grey hair; which to me is a visible testament to the price we pay for grief and heartache.

Mitch always wanted to sit next to me when I was at the grill. He’d sit on a stool and quietly talk to me about things that were on his mind. Sometimes he didn’t say anything at all. He just wanted to be – and that’s okay, too. Often, Mitch would make funny observations that were both insightful and witty.

I remember this summer afternoon so vividly. I also remember having a distinct impression this day that a terrible life storm was on the horizon and that darkness was near. I didn’t understand that feeling at the time, but looking back, I can see it was my loving Father preparing me … in effect, warning me, to make moments matter.

For almost 2 years following the death of Mitch, certain places in my home evoked the most tender feelings. Whenever I was at my grill, I’d instinctively look to my side hoping to see little Mitch next to me, only to find emptiness. I’d burst into tears, and my heart would break all over again. For a season, all I saw was emptiness, everywhere. I had an aversion to certain rooms in my home – for they reminded me of my absent son and those places became a source of deep pain.

Over time, however, I knew I needed to create new memories in those empty places – to fill those voids with something of joy and happiness. It took time. Step by step, new memory by new memory, I began to replace that sense of profound emptiness with something new.

I think part of my grief was magnified because I wanted to go home … you know, the home I once knew and loved. Yet everything stood as a testament that I was no longer home and that I could never go there again.

Author Thomas Wolfe wrote a book, You Can’t Go Home Again (1940), where, among other things, describes how the passing of time prevents us from returning “home again.” On at least one level, it is a brilliant meditation on life and making the most of the time we have.

On my grief journey, I had to learn that I could never go home again … at least to the home I once knew. That time before with little Mitch was my old home. Today is now and that is where I’ve learned to live.

I chronicle my journey with Mitch here, not to fixate on yesteryear and on sorrow – but instead, I write my memories as though I were a weary traveler who discovered a treasure, a memory I wish to keep. I put it here for safe keeping.

Pain has been my teacher and has shown me how to appreciate my present. Whether through death or simply the passage of time, all that we have today will be different tomorrow. In a few short years, my children will have graduated from high school, and I will never be able to go back to this home I have now again. So today, I will live in my home … my current reality … and I will love that place and all that dwell therein. For on some tomorrow, I’ll have a new home, and I’ll learn to adjust once again.

A GRIEF REMEMBERED

Mitch had passed a few hours prior and we each spent sacred time saying goodbye to our boy.  His body was beginning to change, and it was disturbing to see.  I was frightened by the spectacle of it all.  So, I called the funeral home and asked them to hurry.  Soon, in the dark of winter, I’d hear a soft knock on our door that would usher a kind of trauma we weren’t prepared to experience. 

The death of a child is exactly similar to the birth of a child.  It changes you forever.  In the same way, your life is multiplied by their very existence, it is divided by their absence.
— Christopher M. Jones | Mitchell's Journey

The funeral home employees were kind and professional and went reverently about their work.  They entered Mitchell’s room and slid a sheet under his body, then lifted my sweet boy onto a gurney, then strapped his body in.  They covered his cold form with his blanket – not to keep him warm, but to show respect for a little boy who had gone too soon.  I suppose the covered him, also, to soften the blow.

Natalie stood at the foot of Mitchell’s bed with a look of horror and disbelief on her face.  Indeed, it was a horror show.  In the long nights that would follow, my dear wife would weep and say, “I don’t want to live.” The long night of grief had just begun – and a long night it would be.  As a husband and father, I scrambled to keep myself, my wife, and children together.

In truth, I don’t need this photo to remind me of this horrible, yet sacred event.  The memory of this night is seared into my mind and soul – written in the most permanent of inks.  I keep it, however, not to wallow in sorrow – but to stay sober about life.  To stay centered in the heart and soul.

The other day I had a lunch appointment with an old friend and colleague.  We talked for a while and covered a lot of ground.  It isn’t my practice to talk of Mitch or grief with people unless they ask.  But, somehow our conversation turned toward Mitch, and we started to talk about life and loss.  My friend had lost his sister many years ago, and though he grieved her loss, he didn’t understand the degree of sorrow his parents felt.  He tried to understand – but until you experience it – it cannot be fully understood.

At one point in our conversation, I observed the spectators of grief – you know … the ones who, from the comfort of their own life say things like, “Isn’t it time to get over it?”  Or, “Just be glad you’ll see them again in the next life.”  These, and a million platitudes like them, only cut deeper into tender wounds of the soul. 

I said, “There is a kind of darkness one comes to know when they lose a child.  And when you walk through that wilderness, you eventually come out the other side a different person.  You change.  Suddenly, the world is different.  The pettiness of people and so much of what consumes society is both pedestrian and trivial.  It’s like someone who knows only simple math is trying to tell you how to solve an abstract problem with theoretical physics.  Suddenly, their level of understanding is elementary – and you are in graduate school, whether you’re ready or not.”

I went on to say that when I hear people talk of people ‘moving on’ I want to say, “Okay, here’s a thought experiment.  What if I told you to leave your young child (or grandchild) on the corner of a busy road and never look back?  What’s more, you only have a few weeks to stop loving them – then, you must never feel after them. You must stop talking about them and act as if they never existed.  Move on.  Get over them.  Impossible, right?  Why?  Because we love them – and that love is forever.  So it is with grief.  Yet, so often, grief feels a lot like love with nowhere to go – and it hurts to hold it in.”

We both had tears in our eyes.  He could see my pain begin to surface and he said, “I think I’m beginning to understand what my parents felt … and feel.”  I smiled and told my friend that grief, like love, doesn’t end.  Though our conversation was met with tender feelings – it was also healing and bridge-building.  Talking helps.  Remembering can be soul-soothing.

The death of a child is exactly similar to the birth of a child.  It changes you forever.  In the same way, your life is multiplied by their very existence, it is divided by their absence.

A grief remembered is only love trying to find its way.

A LIFETIME

I took this photo at a family function today and was overwhelmed with feelings of love and gratitude for my wife and kids - at the same time, I felt an empty longing for little Mitch. What I’ve learned on my grief journey is that I can be happy and sad at the same time, restless and still, empty but full.

More than anything, I am in a place of peace and acceptance for all that there is, all that ever was, and everything that is yet to be.

I have more stories of tender Mitch I want to share - but I’ve spent the last few months focused on my family. Healing from the loss of a child, it turns out, takes more than a little time ... it appears to take a lifetime.

#mitchellsjourney #makeeverydaycount

TO MY GREAT SURPRISE

I remember how playful my children were at this moment and how much they loved their mother.  We were at a reunion and every family was back in their hotel rooms to rest a little.  As a Dad, my heart swelled when I saw our kids laugh and kiss Natalie’s cheeks to let her know how much they loved her.  This was an emotional payday for my sweet wife and best friend – and my soul smiled, glad to see her cash in a little on all the long nights and thankless days.  I was glad to capture this sweet exchange because this was one of those perfect moments that can slip through your fingers like the finest sand.  On the darker days, these good times remind me that not all of life is bad.

Somehow, some way, if we’re patient, and if we seek to find meaning before we seek peace … we’ll heal faster and hurt a little less.
— Christopher M. Jones | Mitchell's Journey

As far as I can tell, I believe one of the hard truths about life is this: things don’t always turn out well.  And sometimes, things can go terribly, horribly wrong.  Bad things can, and probably will happen to us.  If we live long enough, our hearts may be broken many times and we might suffer a great deal over the years.  But between all those hurts we’re going to experience many, many happy times. 

I still miss my little boy and I’m still grieving – but I think I’m entering a new stage of grief – that is the stage of deep acceptance.  When I think of the stages of grief, I don’t think I ever experienced anger – only great sadness.  Maybe I did experience anger … but I don’t ever remember being mad at God – only very, very sad.  I could have filled an ocean with my tears.

On my grief journey, I often wondered what acceptance would mean to me.  I think I’m beginning to understand.  At least for me, I’ve learned to accept I will forever miss little Mitch.  I accept there will always be an empty chair at the table of my heart – and I’ll long to see it occupied.  I accept that I now live with chronic [emotional] pain.  Yet, pain, like every emotion, has its time and place.  The emptiness is always, but the pain comes and goes – as does joy and peace.  As time progresses, the peaks and valleys are less intense.

I think about Mitch daily – sometimes I cry, other times I smile, and increasingly, I giggle over the cute things he used to do. 

I’m beginning to discover something about what can happen to the wounds that cut us so deeply.  Somehow, some way, if we’re patient, and if we seek to find meaning before we seek peace … we’ll heal faster and hurt a little less.  To my great surprise, these terrible wounds are turning into soft, peaceful memories – and fewer tears fill my eyes.

WHEN THE TIME COMES

WHEN THE TIME COMES

Recently, our family went on a short trip to spend time together and heal a little.  On the drive home, we saw a spectacular sunset, and I couldn’t help but think of little Mitch and his love of atmosphere and beautiful evening skies.  At that moment, I was overwhelmed with feelings of love and gratitude, peace and grief.  I wonder if I’ll ever get used to feeling so many things at once.

If you remember only one thing from this post, remember this: our loved ones understand everything we feel.
— Christopher M. Jones | Mitchell's Journey

As Natalie was driving, I took a photo of my two favorite things … sunsets and my sweet wife.  How I love this woman and the goodness that is in her.  Whenever I’m with her, I am a better me.  A heavenly gift I don’t take lightly.

In this same moment, memories of little Mitch wrapped around me like a blanket, woven with feelings of the softest thread.  For a few moments, it felt like I was being smothered in Mitchell’s love.  Tears filled my eyes as I allowed those feelings to wash over me – and that, too, was healing.  I couldn’t tell if Mitchell’s spirit was nearby or if I was simply reveling in the love I have for my son.  Either way, I was grateful for this moment of supernal peace.

After a few minutes, I began to realize night was soon coming, and I wondered if my night terrors would return.  I now recognize that I suffered from a form of PTSD and had no practical support to guide me through the process of healing.  I just learned to write it out, here on Mitchell’s Journey.  Only recently have I not been afraid of the night – those moments between sleep and consciousness; where the rawness of loss would cause me to wake in the middle of the night in a heartbreaking panic, then I’d weep until I could hardly breathe.  I am grateful that no such nightmares visited me that night, as they have so many times before.  I think, for the most part, that part of my grief journey is over.  Even still, those nightmares visit me from time to time – and it is as though I lost my son all over again.

What I’ve discovered on my grief journey is moments of peace will come when I least expect it.  Then, in like manner, the terror of loss will take me to my knees.  Between those opposites, I also experience everything in between. 

At least for me, I’ve discovered something that helps along the journey of grief … and life for that matter.  I’ve learned that when the time comes, I’m better off if I allow whatever feelings I experience to take their course.  When joy comes, I embrace it fully.  I don’t feel guilty for being glad … instead, I’m glad that I’m glad. In many ways, that makes me even more glad.  When I’m sad, I don’t brush it away or pretend those feelings don’t exist.  The suppression or denial of feelings only serves to canker and become strangely malignant.  I suppose the only feeling I don’t entertain is hatred or anger – which, if left unchecked, poison the soul. 

Some people who grieve worry that feeling joy, peace or gladness is a betrayal of their love and loss.  That somehow stepping into a place that isn’t so painful is to step away from the one we lost and suggest no longer care for them.  That is simply not true.  We can grieve and grow at the same time or at separate times – and that’s okay.   Then there are some well-meaning, yet deeply misinformed people on the other side of grief who say foolish things like, “Be happy!  Don’t be sad; your loved one wouldn’t want you to be sad.”  That is blubbering nonsense.  If you remember only one thing from this post, remember this: our loved ones understand everything we feel.  They’re not disappointed in us when we’re sad – they understand how much we love and miss them.  When we’re happy, they don’t feel betrayed – but glad for our own gladness.

This night, as I saw my beautiful wife and the evening sky that brought my heart close to Mitch, I felt a potpourri of feelings and I allowed them, unrestrained, into my heart and soul.  It was both painful and beautiful.  Mitch taught me that when the time comes, face it … whatever it is.  He did that in life and in the face of death.  When he realized he was at his life’s end, he faced hard things with dignity and courage.  Though I stumble drunkenly in his shadow, I try to follow his quiet example … when the time comes, face it and embrace it.