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.

A LITTLE ON THE INSIDE

Parenthood has been the most difficult yet rewarding experience of my life. I wish I could say I did it perfectly, but I didn’t … and I don’t. Nobody really does. Anymore, I don’t try to be the perfect parent … I just try to be loving and kind … to be the father and mentor I wish I had growing up. It is difficult at times, because I don’t know what to emulate – so I just try to be what I never had. I try to be what I wish I had and that’s the best know to do.

At the end of my days, when I kneel before my Father and account for my life, I hope He looks upon my efforts in the same way I try to look upon my children … with a heart of compassion, pleased with effort and personal growth over the illusory achievement of perfection.

When Mitch came home with a drawing or school assignment, I was always so proud of how hard he tried. I would hug him and kiss his face and tell him, “Great job, son. I’m so proud of you. Keep trying and you’ll better and better.” Always, there were imperfections in his drawings … but for him, he did it perfectly. Perfection is a relative term; for he was a young child and did the work of a young child. I didn’t care about flawless execution … at his age, I wanted him to be recognized for doing a little better than the time before. I wanted him to believe in himself and be proud of his accomplishments. As far as I can tell, belief-in-self is the bedrock of education and the scaffolding of character. At the same time, I am a strong believer in providing corrective feedback so that we might know where to stretch ourselves the next time. But, always, offering my children earned praise is high on my list of to-do’s as a father.

On this occasion my neighbor and friend, Jeff Winegar, offered to take our family to Snowbird so Mitch could participate in an adaptive sports program for kids with disabilities. Mitch was nervous about it because he knew he wasn’t very strong and that what little strength he did have would dissipate quickly. “What if I fall, Dad?” Mitch would ask me nervously. I assured him he wouldn’t be required to do anything for which he didn’t have strength and that they had something special for him – so that he would be safe and have fun. Mitch sat in a small carriage attached to two skis. Behind him were two purple tethers which allowed an adult to ski behind Mitch and control his speed down the mountain. All Mitch needed to do was to lean right or left as he decided where he wanted to ski down the mountainside.

I asked my friend Jeff to be on tether while I skied backward to take a million photos of my son. I loved looking at Mitchell’s expressions of glee as the cold wind rushed against his rose-colored cheeks. At first, I saw an expression that seemed to say, “This isn’t so bad. I’m not scared anymore.” Then later, his face seemed to say, “I’ve got this! I can do it!” I was so proud of Mitch and overwhelmed with gratitude as I saw my son’s countenance filled with a new form of self-confidence. He couldn’t race down the mountain like an Olympian, nor was he required to; but he could bravely face the steep slopes and do what he could, with the heart of an Olympian. That is winning, too.

I remember kneeling in prayer that night thanking my Father for giving my son such a great experience. I also thanked Him for giving me the blessing of children - a gift for which I'm eternally grateful. Because of Mitch, each day I try to grow a little on the inside, just like he tried. If I color a little outside the lines, I recognize it and try to do better next time.

Maybe that’s the point of it all … to get better a little on the inside each time. Musicians do it, athletes do it, academics do it … nobody achieves greatness in an instant … but through getting a little better each time. And those who have mastered their craft will each say it comes from within. It always comes from within. Each day. A little on the inside.

 

THE NIGHT YOU LEFT US

THE NIGHT YOU LEFT US
Today and tomorrow is a sacred time for my family. Just a few short years ago my son passed away on this very evening. We have healed a great deal since then, but there is still a sacred tenderness from a wound that still bleeds. A wound that still needs to be cared for.

This is a letter I wrote my son last year. A message of love from a heartbroken father to his son whose somewhere on the far side of the sea.

Dear Mitch,

The days leading up to your passing were surreal. It was cold outside. Snow everywhere. As the world spun madly on – everything as we knew it was coming to an end. It’s strange, you know, to live among a crowd of people yet feel like you’re worlds apart. That’s how it felt when you were slipping away. Everything on the outside seemed like a dream, oblivious to the hell on earth we were living. There we were, invisible to the world, living in the quiet of our home – and in the depths of our greatest nightmare.

With every dose of medication, you drifted further and further away. You knew what the medicine was doing to you – and you sometimes resisted it because you didn’t want to sleep. You wanted to be awake as long as you could – to live as much life as possible, as long as possible. I could almost hear it, you know … the crunch of the snow as death circled our home, every once in a while I could almost hear it gnawing and gashing at our door – violently trying to break through. I knew it was only a matter of time before death would take you away.

Just a few months prior, I wrote a letter to our family about your heart and how your life was nearing its end. I was careful never to let you see this letter because I didn’t want to frighten your tender heart. In the letter I wrote:

"Today Natalie and I sit with Mitch on the edge of an invisible cliff. He can't see it, but my wife and I can - and the mouth of the abyss is yawned and inching to devour our son. Yet, Mitchell looks out into the vast horizon unaware and envisions a long, bright future ahead of him. In his little mind, he is already making big plans. He wants to build a home next to ours with a tunnel connecting our basements so he and his dad can watch movies and make popcorn. He wants to work for his dad when he's older. He talks about his own kids one day and how he’ll raise them like we raised him. As he points to his vision of the future with youthful enthusiasm and a zest for life, he doesn't realize that he sits on the outermost edge and the ground from under him has crumbled away into the darkness – and his little body is hanging on by a pebble. What Mitchell doesn't understand is the beautiful horizon he sees is only a mirage, and in reality, the sun is setting on his own life."

It was surreal to be with you on the edge of life and death.

It was different than I imagined. More beautiful and at the same time more horrifying than I had a mind to know. But your time at home was filled with love and laughter – and for that I am grateful.

Your quiet, tender ways about you made your mortality and eventual death all the more painful to witness. How often I prayed for heaven to take me, instead of you.

Son, do you remember getting this gift? Well, there is a profound story behind it … a tender mercy put in motion almost six months earlier. I’ll tell you about that another time. But what I want you to know is – heaven was at work preparing the way for you. You were never alone. Not ever.

The people in your path were meant to be there. From your best friend, Luke, to your school teachers and your Bishop … it was as though everything was perfectly timed … just for you.

Your final weeks at home were a mixture of heaven and hell – all rolled into one. A beautiful agony I cannot to this day find words to describe.

There was a distinct moment I could no longer hear the crunching of the snow … the circling of death pacing around our home. I no longer heard the pounding and gashing of death clawing at our door. Death was in our home – and I couldn’t stop it.

Mitch, my precious child, I’ll never forget the time you wanted to be with me and play Legos. You were too weak to sit up on your own. You just wanted to be close … to lay on the edge of my lap and play like a little boy. Your muscles were so weak, and you were so tired that I had to hold your head in my hand to keep it stable. It was then I knew time had run out and whatever we had left was worth more than all the money on earth.

Time seemed to glitch. One moment it would stretch out … other moments went by in less than a blink.

Then, came the night you left us. The night we said goodbye. The night you slipped into the abyss, and all became dark. Never had I known such darkness, borne of grief and heartache.

As your mother and I were swallowed up in sorrow, we wondered how we could live without you. There, in a spiritual pitch of night, something happened I did not expect. As I prayed for understanding and pondered deeply on the meaning of life – almost as if against the backdrop of a darkened sky, I saw a little fleck of light. A tender mercy that until that moment I did not have the eyes to see. Then, the more I looked, the more I began to see – heavenly blessings that were meant for you … and some that were meant for your mom and me.

My eyes began to open. Over the next few years, what I began to see was beautiful. Like a heavenly constellation, these tender mercies, as if little points of light, showed that we are not alone – even in the pitch of night.

I’ll write you again, son. I have so much to share. I wish you were here – or me over there.

I’ve been traveling the broken road for five years now. Sometimes I travel through the wilderness of grief, other times the desert – where the scorched land burns my feet. And when I am lost, I have learned to look up and remember these points of light. For if heaven has played such a role in our past, you see, I can have faith in what is yet to be.

Sometimes I wonder where you are, exactly, on the far side of the sea. Maybe you will come to visit me – in the quiet of my dreams. And if you do, I want to know what you see.

Love,

Dad

CAN’T I STAY A LITTLE LONGER?

You know those magic moments where time slows, and you wish you could stay there forever?  This was one of those evenings.  It was ordinary by all accounts.  The Saturday chores were long done, our kids were bathed and getting ready for bed, and the sun was making its slow descent behind the hills.  The summer breeze wrapped your skin like a warm blanket, and you could hear crickets begin to sing their soothing songs. 

Come as often as you like.  Take what helps, heal what hurts, and find gratitude for all that ever was and is yet to be.
— Christopher M. Jones | Mitchell's Journey

I had just stepped outside to take the garbage out when I noticed my two youngest.  I smiled as I watched Mitch hum a song as he scooted about, while Wyatt had an imaginary conversation, tromping about the driveway in his tiny shoes.  I can almost smell Wyatt’s freshly shampooed hair and feel the warm cotton of his pajamas, just out of the dryer.  I miss those days.  As I pulled out my phone to take a photo of life in motion, tiny Wyatt ran to his brother’s side, eager to make sure he was in the shot.  Wyatt reached for the handlebar and pressed his baby index finger onto Mitchell’s hand as if to give him a tiny hand-hug and say, “That’s my big brother, and we’re buddies.”  

 As I look closely at this image, I can see the breadcrumbs of an extraordinary life hiding in plain sight.  Mitch held a purple pencil in his hand and a teddy bear between his legs … evidence that children treasure the little things.  Mitchell’s smile bore a fading milk mustache from lunch a few hours earlier.  Wyatt wore his favorite Spiderman t-shirt and bore a similar mustache – except he also had crumbs from a cookie he’d recently gobbled down with a feverish giggle.   There stood my two youngest kids … tiny, cute, perfectly imperfect, little messes.   At this moment I was overwhelmed with gratitude; I was so glad to be a dad.

 I was so swept up with this moment, I didn’t want it to end.  I’m reminded of the phrase, “Can’t I stay a little longer?  I’m so happy here.”   That’s how I felt … and I wanted to live there forever. 

 Today, my heart says something similar.  When I think back on my Camelot years, my heart whispers, “I was so happy then.  If only it could have lasted.  Can’t I just visit for a moment or two?”  There is a part of me that wishes to go back in time because I’d relish moments in ways only a grieving heart can fully know. 

 In a way, I do go back in time.  Only the events are fixed and, I am as a ghost visiting old times and familiar places in my mind.  That’s what writing is to me: a time machine.  These days 95% of my life is concerned with now and the future – but I will always reserve a little space to visit my past with a tender heart and pencil and paper.

 I go back in time for at least 4 reasons:

  1.  So that I won’t forget the little things. 

  2. To make meaning of love, life, loss, and suffering.

  3. To clean and dress my wounds.

  4. To foster gratitude for what was and to better appreciate what I have today.

Going back in time can be tricky.  If we’re not mindful, we can irritate our wounds in such a way they won’t ever heal.  And sometimes, they’ll get infected.  At least for me, intention has a lot to do with how I choose to heal.  When I go back in time, I am always looking to understand the past, to mend what’s broken and strengthen my feeble knees.  Sure, I cry -- but they are cleansing tears … the kind that keep the soil of my soul soft, fertile, and growth promoting.

 The inevitable consequence of going back in time is my heart cries, “Can’t I stay a little longer?”  But then the less broken part of me says, “Come as often as you like.  Take what helps, heal what hurts, and find gratitude for all that ever was and is yet to be.”  Those are the words that resonate deep inside of me.

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]