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.

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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.

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]

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.