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.

WHEN THERE’S NO ROOM FOR GRIEF

A few days ago, I was cleaning my inbox and stumbled into a letter I wrote my family the night Mitch passed away. I wasn’t expecting to see it, so when my eyes saw the headline, “Mitchell Passed Away”, I was immediately swept up by a tidal wave of tears. After I gained my composure, I began a journey through time, reading emails that were sent the weeks following our son’s passing.

One person especially close to me, just a few weeks after Mitch passed wrote, “Now that the worst is over …” I was mortified by her words and sad to see how out of touch that person was with reality. I thought to myself, “I guess she’s lucky she doesn’t understand.” What she and many others didn’t realize was the worst of everything was just beginning. In matters of grief, especially the loss of a child, hell happens in the aftermath of death. Let me say that again: hell happens in the aftermath of death.

What followed in the weeks, months and years was a new kind of journey for me – a journey where we had to learn to heal in a world where there seemed to be no room for grief.

Two years after my son passed, I was on my way to Southern California to take my oldest son surfing. I remember exactly where I was when I received a call from a friend and colleague from an earlier part of my career. She wanted to give me candid feedback. She was convinced I was stuck in grief and that I needed to move on – yet there I was, with my oldest son, very much moving on with life. No effort was extended to understand my mind and heart; instead, after reading a few stories, she felt that my writings were self-focused and something resembling a sermonette. I appreciate truth and candid feedback, however much it might bruise my ego, yet in her almost flippant assessment of things, I couldn’t help but think of Anis Nin’s observation: “We don’t see things as they are, we see them as we are.” What she didn’t understand was that my writing found here on Mitchell's Journey was a private journal that I chose to make public – not to solicit sympathy, but to help others who might be struggling with various aspects of grief. Writing had become my therapy – yet, according to her, there seemed to be no room for my therapy. No room for grief.

Another year would pass, and a well-meaning colleague (who has such a good heart) would put his hand on my shoulder and summarily tell me that the time for grief was over. With a slap on the back, he told me the time had come to become like a caterpillar and transform into something new. Again, according to my friend, there was no room for grief. He was ready, and therefore I should have been ready.

Those who read Mitchell’s Journey know I am a man of faith. I not only believe in God, I love Him. I am not angry at Him over the loss of my child. I am hurt, but I’m not angry. In fact, I have come to recognize the many tender mercies He has provided our family; blessings that eased our burdens and offered light to an otherwise darkened path.

Even still, I’ve observed a kind of isolation that comes from people of faith, especially those who haven’t lost a child. Often, when sharing words of hope, people can inadvertently dismiss or diminish the pain of the sufferer. We’ll hear things like, “In the eternal scheme of things, this life is but a blink.” To them, I say, “Life is the longest thing I know. Now that I’ve lost my child, this life is an eternity.” Others say things like, “Don’t be sad, you’ll see your child again.” To them, my heart cries out, “But my heart pains to see my son today. I miss him so, and I don’t [yet] know how to live without him. I’m trying my hardest to find a way.” I’ve seen others, even those who have lost a child say things like, “I’ve had a spiritual experience, and I’m okay – therefore, because I’m okay, you should also be okay.”

They leave no room for grief. And when there is no room for grief, there is no room for healing.
— Christopher M. Jones | Mitchell's Journey

There is an endless, almost nauseating list of platitudes and poems that would seem to leave no room for grief. One poem reads, “Death is nothing at all. It doesn’t count.” To that, I say death, aside from being born, is the biggest thing that will ever happen to you or me. It counts a great deal. Poems like these would try to convince us that nothing has happened, that everything remains as it was, our loved one slipped into the next room - just around the corner … when in truth, after the death of a loved one, everything is different, and nothing (at least in this life) will ever be the same. That room of which they speak may as well be on the other side of the universe. Poems and platitudes sometimes dismiss the hard realities of grief and mortality. They leave no room for grief. And when there is no room for grief, there is no room for healing.

This Friday will mark the 5th anniversary of my son’s passing. It took almost 4 years for the worst to pass. What’s more, I’m not stuck in grief – but it is a heavy burden to carry, and to others, I may appear to walk slowly. I’m not a caterpillar anymore, and what I am becoming is only just emerging – in my time and in my own way.

I’ve had the burden and blessing to speak to thousands of people over the last few years about perspectives on grief. I am a young student of the subject and have much to learn. What I know so far is, sorrow is sacred. There must be room for grief.

If you know someone who's suffered the loss of a child, or has a terminally ill child, you can serve them by giving them room for grief. When I say room, I don’t mean space away from them. What I’m saying is you can give them a safe space to talk about their loved one. Giving room for grief can be as simple as saying, “I’m here for you. I care, and I want to listen to your heart.” Your friend may not trust you at first because the world has taught them, over time, there is no room for grief. Everyone is different, but if you’re patient, they’ll eventually feel that you’re safe and will open up to you.

You may be tempted to avoid such subjects with your friend because it is awkward or sad. Sometimes, if we’re to serve our friends, we must set aside our uncomfortable feelings of empathy and give space for the sufferer’s hard reality. You may worry that talking about “it” will touch an already tender wound or that your friend might suddenly remember the realities of loss – as if by avoiding the subject, they might forget the worst thing that could ever happen to them. By avoiding conversation, we leave no room for grief. It is helpful to remember that your friend is already sad and that talking is therapeutic. What’s more, talking about it doesn’t remind them of their loss – they think about it every single day – only in isolation and compounded sorrow.

In many ways, I feel like I’ve come a million miles since I’ve lost my son. Yet, I still have a billion miles to go. I know sacred truths about the immortal soul. I also know that our loved ones are sometimes near. I have experienced moments of peace that surpass my mortal understanding. These things I know of myself and no one can take them away from me. Yet, moments of peace and pain come and go like the ocean tide – that is just part of being human.

Even after 5 years, I still need room for grief.
 

ON SILENCE & SUFFERING

It had only been a few hours since I knelt at this very bed and whispered into my son’s ear how proud I was to be his daddy and that he didn’t need to hold on any longer.  I knew he was tired yet didn’t want to leave for fear of hurting us.  I also believe part of him didn’t want to leave because he loved to be alive – I mean, he truly appreciated life.  I told my little boy how much I would miss him but that he would be okay and he didn’t need to be afraid. 

This sacred room had become a spiritual train station and my little son had departed on a one-way trip.
— Christopher M. Jones | Mitchell's Journey

I often hear parents agonize over saying goodbye to their children at the airport as they go to college, serve missions, or move to some other place.  Though I understand the sorrow of saying goodbye, temporarily, to a loved one … I’ve come to know a deeper, inescapable, nearly suffocating sorrow when you must say goodbye to a child for life. 

The morning sun had broken and I was still in a state of shock.  Incredulous, I went back to Mitchell’s room, wanting to see if it was all a bad dream hoping to discover my little boy was still with us.  My heart broke as I saw my dear wife sitting where Mitch once giggled just a few days prior. 

Natalie was surrounded by everything that gave Mitch comfort in hopes of feeling close to him.  I knew how much she loved her son and how devastated she was to lose him.  Little Marlie, sensing Natalie’s suffering, jumped on her lap in the same way she tried to comfort Mitch when he was dying.  Natalie closed her eyes and wept.  She had a profound spiritual experience earlier that morning, under the cover of a winter’s night sky – but that didn’t take away the pain of losing him.

This sacred room had become a spiritual train station and my little son had departed on a one-way trip.  Though I said goodbye, I remained unsettled that I didn’t say everything my heart wanted to say.

Our journey with grief was just beginning and things would get worse … much worse … before they would start to get better.  This photo was taken a little over 4 years ago.  We have healed a great deal since, but we still mourn the profound loss of Mitch.  Not a day passes we don’t think of him a thousand times.  However, behind our smiles and cheerful dispositions are hearts that are still tender … still mending.

There comes a point where observers no longer feel sad with that person, and they begin to feel sad for that person. 
— Christopher M. Jones | Mitchell's Journey

It wasn’t long after the passing of Mitch from heart failure, a neighbor/friend down the street received a heart transplant.  I remember visiting him at the hospital while he was in recovery, with some of our neighbors.  At one point, I had to step into the hall to weep a little.  I was sincerely grateful this good man had a second chance at life – in fact, I wept for his family and prayed fervently he’d survive his own struggle with heart failure.  So, watching him smile softly in his recovery room brought me great joy.  But, without warning, the pain of my son’s loss to heart failure overcame me and I struggled to catch my breath.  In that moment, I felt like a young child who missed the bus as I saw it drive into the distance … that overwhelming sense of doom and panic that maybe I didn’t do enough to fight the system that denied my son a transplant.  Agony coursed through my veins like a drug and I was in emotional hell.  As my friends and I left the hospital, they were oblivious to my silent suffering – and it was then that I realized after all is said and done, the journey of grief is traveled by one.

At what point does grieving the loss of a child become decidedly sad, improper, or morose?  On the surface, such a question seems unconscionable.  Except, the hard truth is there is often an underlying expectation that those who grieve move on at some point.  There comes a point where observers no longer feel sad with that person, and they begin to feel sad for that person. 

So, what does moving on mean?  I know what moving on looks like for observers … at first, they feel deeply for a season but then their mind and attention shifts to other matters in their own life.  That is as it should be.  Everyone has their own set of struggles and in time, those issues take center stage in their lives – especially as time passes.  Moving on for the sufferer is not so easy – particularly when it comes to the loss of a child.  When someone becomes a parent, they are changed forever in ways that are difficult to describe.  That little soul we ushered to life becomes a deep part of our identity and whatever happens to them, happens to us.  When we lose them, we lose a part of us we can’t get back.

Observing how others respond has been interesting:

  • As time passes, some of those closest to us avoid conversations about our fallen child for fear it would make us sad.  (Don’t worry, we’re already sad.) 
  • Some are uncomfortable because they don’t know what to say or how to say it. (I’ve found the most helpful thing to say is, “I want you to know I care.”) 
  • Others worry they’ll say something wrong and offend.  (Perhaps the most powerful thing you’ll ever say is, “I’m listening.”)
  • Still others avoid talking about pain because of their own struggles with pain. 
  • On the other side of the spectrum are those who think they have all the answers … they say things like, “Don’t be sad.  Your child wouldn’t want you to be sad.” 
  • Some, foolishly, will square their shoulders, look you in the eye, and tell you they think it’s time to move on – as if their bold, armchair counsel can do in a moment what psychologists can’t do for their patients in months or years.  

Whether people pull back or lean in, it seems to me all those things serve to further alienate the sufferer.  They silence their pain and take it to a deeper place, far from view or criticism from others – often not knowing what to do or where to go.  Sometimes that hidden pain becomes emotionally cancerous, other times it leads to deep depression, anxiety, or unspecified anger.  This can be a dangerous state of being.

Because memories are subject to fade ... some parents want to talk about their loved one(s) – not so much that you won’t forget … but so they won’t. 
— Christopher M. Jones | Mitchell's Journey

I have discovered that for many who have lost a child, talking about them is a form of therapy.  In part, it helps because we don’t get to make new memories with them – we only have yesterday's.  Because memories are subject to fade, I’ve observed some parents want to talk about their loved one(s) – not so much that you won’t forget … but so they won’t.  We cling to details because that’s all we’ve got and they are treasures beyond price. 

Suffering is hard enough.  Suffering in silence, harder still. 

If you have a friend who suffers, lend an ear, a caring heart, and a soft shoulder to lean on.  Even if their loss was years ago – no matter how well they hide their hurt, it is there.  Letting them know they’re safe with you and that you care can help those who hurt work through their struggle.  With your love and heaven’s help, perhaps they can put a few pieces back together.

[This photo was taken on March 2, 2013.  7:50 AM]

EMPATHY

When I was a young boy, I remember sprawling across my mother’s lap as she softly tickled my back and arms.  Within seconds of that gentle touch to my skin, I’d fall into a wakeful trance and wouldn’t move a muscle for fear she would stop.  I remember just after Natalie and I were married, I asked her if she might tickle me for a minute.  She paused and gave me a curious look, then started to move her hands toward my armpits and wiggle her fingers as if to make me giggle and squirm.  I laughed and said, “No, no, sweetie, not THAT kind of tickle … this kind …”  I’d then softly run my fingers down her arm and she said, “Oh! I see.”

Sympathy knows the words, but empathy understands the music.  Sympathy say’s “I’m sorry.”  Empathy feels your pain and cries with you
— Christopher M. Jones | Mitchell's Journey

Our children inherited my love of soft tickles – especially as little kids.  It was a great way to sooth a sorry heart, distract from the pain of a scraped knee or help a sleepless baby relax on a hot summer night.  Mitch often asked me to tickle his arms when he was home on hospice.  It soothed his worried heart.

Just a few days ago I was talking to my 11-year-old son, Wyatt, about philosophical stuff.  He’s naturally drawn to ideas and wants to discover their meaning and purpose.  He asked me, “Dad, what makes a person good at tickling?”  I thought a moment and said, “Well, it seems the softer the touch, the better it feels.”  Searching for a deeper understanding, he said, “Yes, but what makes someone good at it?” 

I don’t know, son, what do you think?  Wyatt said, “Empathy.”  I was astounded at his insight.  He continued, “You know, Dad, the people that tickle the best are the ones that love it the most.  They really get it.  They understand how it feels, so they know just what to do.”

Humbled by his deep view of empathy, I began to wonder how Wyatt arrived at such profound insight. Then it occurred to me empathy is one of Wyatt’s gifts – and I think empathy a spiritual gift.   

I caught a glimpse of Wyatt’s capacity for empathy when he first saw Mitch in the hospital.  Little Mitch sat softly on his bed with a pale smile, tethered by tubes, cables, and monitors.  His breaths, soft as a moth while his heart, a beating rage.  Mitchell’s chest was beating so violently, it looked like a grown man was trying to punch his way out of his rib cage.  With a furrowed brow, Wyatt fought back a river of tears as he saw his brother losing his life to an enemy we could scarcely see.       

Wyatt, only 7 years old at the time, knowing his older brother was about to die, was careful not to say anything that would frighten his older brother.  He was not only sad to see his brother go, he put himself in Mitchell’s shoes, at least as much as a 7-year-old could, and felt sorrow over all that Mitch would miss.  Wyatt not only felt sympathy, he felt deep empathy.

Surviving the death of my child, I have come to understand the greater difference between sympathy and empathy.  While they have similarities, they are not the same.  In many ways, one is more mental while the other almost spiritual.  Sympathy knows the words, but empathy understands the music.  Sympathy say’s “I’m sorry.”  Empathy feels your pain and cries with you.  Empathy is mourning with those that mourn.

 I remember, just after his funeral, walking behind little Mitch from the chapel to the hearse.  I nearly collapsed to my knees in grief.  I could hardly breathe.  Within moments, I’d follow my son’s body to the cemetery, which drive would be the longest drive of my life.  My best friend, Clay, stood on the curb and with tears in his eyes gave me a hug.  He didn’t say a word – he didn’t need to.  We both wept.  In that moment, I knew he had empathy in his heart and I experienced a measure of healing.

I’m grateful for the teachers in my life – from my youngest son to my best friend, to many of you who teach me empathy … not so much by your words, but deeds.  I’m especially grateful for Mitch, my most tender teacher.

Just before Mitch fell into a sleep from which he’d never wake, he said, “Dad, can I tickle your back?”    Mitch had a heart that wanted to serve – so I said, “Sure, son, as long as I can tickle yours.”  Those precious 2 minutes were the softest, most tender tickles I have ever experienced.  Mitch had empathy and it showed.  My sweet wife took a photo of that act of love from a dying little boy.  I then turned to Mitch and tickled his arms and face.  I kissed his forehead and said, “I love you, son.” 

Mitch whispered softly, “I know.”


 

Mitchell tickling his father's back as an act of love and service.  Even when he scarsely had strength to sit up, he wanted to serve.

 

A SPECIAL VISITOR

This morning we were visited by a woman we met through #mitchellsjourney as Mitch was beginning to die. Her son passed away a few years prior and because of her hardship, she was uniquely prepared to help us navigate the process of death and dying. I spoke of her in my funeral address and described her as a lamp unto our feet as the path before us was dark and very scary. 

In town from her home state of Alaska, she had visited us once before about, a year after Mitchell passed away. That, also, was a tender exchange. 

Today was a reunion just as sweet as these two mothers joined hearts in loss and love. Laurel, this kind stranger-turned-friend gave Natalie a children's book that had a most beautiful message about the love a mother has for her child. The book is entitled, "Mamma, do you love me?" 

As she read the book to Natalie they both cried, and I sat on the couch next to them and cried with them. I will always marvel at the beauty and power of motherhood.

 

THE PASSING OF TREVOR NIELSEN

It is with the heaviest of hearts we share the passing of Trevor Nielsen earlier this morning from complications arising from Duchenne Muscular Dystrophy (DMD). We were blessed to visit with Trevor yesterday afternoon at the hospital and our prayers went out to him and his family after we left. 

Today our hearts our heavy with grief and deep love for this family who loved their son so very much and wanted only for his happiness and health.

We were honored to meet this remarkable young man and family last year shortly after Mitch passed away. In this photo Trevor was getting some enthusiastic kisses from Marlie, Mitchell’s little puppy, while visiting our home. Because he had limited use of his arms due to muscle wasting Marlie had free access to give him a barrage of puppy kisses and she made no apologies for giving him all kinds of love. Trevor laughed and laughed and my heart sang with joy to see this young boy, whom I had just recently met, giggle and smile.

Tonight our family will have a moment of silence and a heart-felt prayer for the Nielsen family. For Jupiter is their home now and the gravity of grief will be heavier than ever.

EVEN TO INFINITY

As much as he loved water, Mitchell was always nervous about the ocean. I remember watching him walking out into the surf just past his ankles, putting his hands on his little hips and thinking for a few minutes. There he stood with his cute little Star Wars shorts and swim shirt, thinking about the adventure that lay at his feet. The waves were small but still intimidating to him because his muscles were weak and uncoordinated. The cold surf would brush up against the bottoms of his shorts and he would hold his ground and giggle as he wrestled with his watery opponent. 

He wasn't that interested in going out much further and I often asked him why – to which he would respond with a half-smile and he would look in the opposite direction. It wasn’t until he was home under hospice care when he finally told me why he was afraid: sharks. When he finally told me I briefly chuckled, then my eyes welled with tears and I kissed his forehead and hugged him and said “Oh, son, how I love you. I would have jumped in front of any shark to keep you safe.” Feeling emboldened by my willingness to protect him, he then asked if we could watch Jaws together.

Like a swimmer who encounters a powerful rip current, thrashing about and fighting the current will waste energy and pull you to the bottom of the sea. But relaxing and allowing the current to take you, as painful and scary as it seems at the moment, keeps you near the surface and conserves energy for that swim back to shore when the current has passed. Managing grief is not much different. 
— Christopher M. Jones | Mitchell's Journey

Before I lost my son I thought I could empathize with those who might have lost a child. But I soon discovered I was merely dabbling in phonetics and wordplay and that there is no word in the human language that can adequately describe the pain of that kind of loss. I want my son back so badly sometimes I feel like I’m drowning in a sea of grief and sorrow. 

I have become a student of grief and am learning how to swim every day. Along this difficult journey I have discovered that grief feels much like wading in the ocean with its many, many currents: sometimes there are peaceful warm moments, other times powerfully sad undertows, plenty of rain, cold pockets and occasionally crushing waves of sorrow that leave you disoriented and scrambling to breathe.

I have observed others, who grappling with their own profound grief seem to be drowning while fighting the powerful emotional currents. While I am new to this loss, their struggle is intensely familiar to me … and I feel like I know those currents all too well. 

At least for me, I am learning to allow the currents of grief and sorrow run their course. Like a swimmer who encounters a powerful rip current, thrashing about and fighting the current will waste energy and pull you to the bottom of the sea. But relaxing and allowing the current to take you, as painful and scary as it seems at the moment, keeps you near the surface and conserves energy for that swim back to shore when the current has passed. Managing grief is not much different. 

Before Mitchell passed away our hospice nurse offered council on managing grief. She was quick to point out how some people tend to medicate their sorrows with various addictions. Her council was to allow grief to take its course, in a healthy way. There is no pill, no drink and no preoccupation that can save you from grief. As Robert Frost once said, ‘The only way out is through’. And, in truth, shortcuts are only a mirage.


But alas, all of this remains wordplay. For the truth is, treading the sea of grief is bewildering. It is cold. It is lonely beyond measure. There is more salt in my tears than all the waters of earth. And somewhere out there … far into the horizon, even to infinity, my son lives. Every part of me longs to see him and hug him once more. And as I look to the captain of my soul and swim how I ought, I will find him again. But the sea of grief remains vast … how deep I know not … how treacherous yet, I know not. I only know that I’m not drowning … and for now, that will do.