TINY FRONTIERS

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A few weeks ago, I was asked to speak with Sarepta, a drug company whose doing some remarkable work with therapies related to DMD. Just prior to my speaking they were learning about pathology and the natural course of its biology. When I was introduced, they said I was going to talk to them about the human side of the disease. They wanted someone to lift the curtain so they could peer in and see the human impact of rare, catastrophic disease.

Because their leadership theme was on frontiers, they asked that I share the tiny frontier’s we faced as a family. From starting a family to diagnosis, progressive loss, death, grief and recovery, each of these presented themselves with new landscapes and challenges.

Using the metaphor of ascending a mountain, I shared an excerpt from an essay I wrote a few years ago entitled “My Everest” where I said I would rather look up on Mount Everest from the comfort of my rocking chair, by a gentle pond.

But life is neither fair nor is it always kind. Somehow, some way, we all must climb our personal Everest.

In this post, you’ll see a few excerpts from my presentation, including a conclusion video that combines two ideas: facing new outward frontiers and the deeper frontier that is found within.

Speaking of the internal frontiers, toward the end of my address, I talked about a certain type of bamboo seed that is known to take about four years to water and care for before it breaks soil. Then, it will grow over a hundred feet in a single month. My point with that example is we can often become impatient with grief, healing or otherwise growing. I shared a few ideas that I’ve discovered that help foster an emotional and spiritual environment for deeper growth.

The video at the end of this post summarizes some of the key ideas I was trying to convey - most notably the greatest frontiers we will ever face are the ones found within each of us. And, like a bamboo seed (see post, Bamboo & Better Days Ahead), it can take years before we see growth of any kind. Patience and persistence are key.

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.

ON SILENCE & SUFFERING

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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. 

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. 

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.

The morning sun had broken and I was still in a state of shock.  I went back to Mitchell’s room, incredulous, 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 to cover of a winter’s night sky – but that didn’t take away the pain of losing him.

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.

It wasn’t long after the passing of Mitch from heart failure, a neighbor and 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.  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 is can be a dangerous state of being.

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 yesterdays.  Because memories are subject to fade, I’ve also 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 that 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]

A NEW MEMBER OF OUR FAMILY

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Nearly two weeks ago, Natalie added a puppy (a teacup pomeranian) to our family. We named this tiny guy Bear. He’s a snuggler, kisser, and sometimes-ruckus-maker. Only 12 weeks old, he still has puppy breath and is quite sweet and tiny. 

Mitch would have loved this dog.

I especially love how Bear follows Natalie everywhere she goes. He wants to be as close to her as he can. When she sleeps, he curls near her neck like they're best friends. I think it’s safe to say he’s a keeper.

I'm starting to grow attached to this dog - but mostly, I love the joy this puppy brings my sweet wife. Her grief journey has been long and difficult - so seeing her find a measure of joy is deeply rewarding.

Mitch loved his mom and he loved cute animals - so this new companionship is exactly what he would have loved. 

I have about 30 new stories I'll start posting soon and many more to come thereafter. This post is just a small window into our family today.


LOVE YOUR STORY (Podcast)

A few months ago I was interviewed by Lori Lee of the Love Your Stories Podcast. Her platform is all about the human story and reminds her listeners that everyone has a story to tell. A philosophy long dear to my heart. She says that in the telling of our stories we not only find meaning and purpose, but we also help others do the same. This was a short 30-minute interview on how I learned to cope as a husband and father.

Click here to listen to other audio interviews with Mitchell’s Journey.

 
 

THE GIFTS OF GRIEF

I remember my childhood excitement when Christmas drew near. Like all young ones, I anxiously awaited that special toy I’d long wanted and wondered what other gifts lay in store every Christmas morning. Mitch loved Christmas a great deal, too. He loved the magic of it all, but most of all, he loved the giving more than the getting.

I search for light in the darkness, for patterns that offer perspective and peace, and I practice an examined life.
— Christopher M. Jones | Mitchell's Journey

When he passed away, Mitch still believed in Santa and tried so hard to be a good boy.

As his father, I always noticed how hard he tried to be good – and he was good. So, on that cold winter night, when I tucked my sweet boy in for the last time, I wanted Mitch to know one last time that his daddy knew he was a good boy. The only gift I had left to give him was my eternal love. With the tenderest of tones, I told him what a gift he was to me and his mommy. I whispered how proud I was of him and that I would spend the rest of my days trying to live up to his sweet example. With a soft kiss on his face, I pulled Mitchie’s blanket over his chest – his heart beating faintly like a flickering candle about to go out. No sooner had I gone to bed than I was awoken by my grief-stricken wife. Our baby made of sand crumbled and slipped through our fingers – never to return.

That sacred night, my heart suffered a mortal wound. Losing my son, who was a most tender gift, broke me in more ways than I have words to describe.

What gift(s) can possibly come from such a loss? Surely there are none, one might think. I know nothing so cold and lonely as suffering the loss of a child. Yet, even in that hell, there are gifts and spiritual treasures to be found. Their discovery doesn’t come easily – which comes as no surprise. Nothing of any value in life or the universe comes easily; as with all things, the greater the value, the greater the price.

I am still a toddler in matters of grief – but I am learning new things every day. Here are a few things I have learned about the gifts of grief, so far:

Grief, a Teacher
I have learned not to run from grief, as though it were my emotional enemy. Instead, it has become my tender teacher. I am a student of grief, and I’m learning new things every day. Grief, a gift? Yes, grief can give us the gift of a softened heart, a more empathetic soul, and can teach us the value of a moment – because, in the end, we’ll never have now again.

Making Time and Space for Grief
At least for me, I’ve found it helpful to make time & space for grief. I’ll schedule it, even. It’s like a therapy session with myself – wherein I am the doctor, and the patient rolled into one. It’s a time for me to meditate, to practice the art of stillness, then examine my sorrow and begin to make sense of suffering. Making time for sorrow a gift? Yes. By making deliberate space to do the work of processing pain, we learn to process our greater selves, too. We will work on grief the remainder of our lives – but, in time, we’ll learn to work on other parts of ourselves, too.

In the Darkness, We See Stars
Perhaps the greatest gift can be found in the very thing we’re most afraid of. Darkness. The moment I began to realize that it was often in emotional and spiritual darkness that I began to see little flecks of light if I allowed my spiritual eyes to adjust. Each point of light, a tender mercy, a gift from heaven that was always there, but I didn’t have the eyes to see them. Once I recognized those blessings and learned to connect the dots, I started to see I was never alone in the dark and that there is a greater work in progress. I have built a workshop around this very theme – to help people identify their own points of light. It doesn’t matter if you believe in God or gratitude, it’s a profound experience for both the individual and the group.

Those are just three gifts of many that I have discovered in my struggle. I miss Mitch. I would give anything I have to get him back. But that isn’t possible, and wishing won’t make it so. Instead, I search for light in the darkness, for patterns that offer perspective and peace, and I practice an examined life. Three gifts I didn’t expect to discover on my journey with grief.

Tonight, under the quiet of a winter sky, not too different from the night I tucked him in for the last time, I will thank my Father for the gifts my son left behind – the gifts of faith, perspective, compassion, and love.

Perhaps the most tender and ironic gift was my son; a beautiful soul who left my world profoundly empty, yet strangely full.

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.