About a month ago I pre-recorded a virtual keynote for a conference in Israel. I was honored to share our son's story with this remarkable group of medical professionals, caretakers, parents, and patients. When I'm asked to speak, hosts usually ask me to spend 1-2 hours (which goes by in a blink) - so condensing this to 15 minutes was a challenge.

The title of this keynote was "The In-Between: Why the little moments matter more than you think." Translated in Hebrew and Arabic, It was an extension of an earlier keynote I gave for PPMD where I suggested the best moments in our life exist in the in-between. At the end of the day, when we long for what we lost, we don't long for trips ... we long for the ordinary. In an earlier essay, I wrote "I miss everything in between. I miss everything that was ever routine."

At least for me, grief has taught me the very things I long to do with those who are gone are the things I should be doing with those who are now living. Time is such a slippery thing ...

The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son.

“The trouble with time is we always seem to think we’ll have enough of it. I don’t know why we’re built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.”

— Christopher M. Jones | Mitchell's Journey

The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.

Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band-aids, scraped knees, and children’s books. But that was not our lot in life.

I’ll never forget our first encounter with our hospice nurse. She was kind, compassionate, strong, and direct. In a way, most unexpected, she was soothing to Natalie and me … parents who felt very much like children, fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition of death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed as I have never prayed before. “Take me!” I plead with my Father, “Please, take me instead. I would endure any suffering if it spared my son.”

After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to grow truly.

Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow.

So, there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears, wondering how I could have been a better husband and father. I made plenty of mistakes, and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes, and I always made things right with my kids. Instead, I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.

The trouble with time is we always seem to think we’ll have enough of it. I don't know why we're built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.

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It was summer and the color of the evening sun had poured into the room like a glass of warm orange juice. Grandpa hiked his pant legs a little as he sat down to tell my small children some tall tales. My little ones sat around him (Mitch on the right), captivated and smiling as their grandfather lovingly wove a story of fiction, magic, and a little bit of nonsense.

Mitch tugged softly at my arm as he pointed to the glowing lint floating in the air as it crossed paths with the window. He said in a whisper, “Dad, it looks like space.” I put my arm around him as he began to lay his head into my chest. Time slowed to a near halt as we had one of those perfect moments you wish could last forever. There were no digital screens to look at, no earbuds drowning out the world, no text messages, RSS feeds and other suffocating distractions … nothing but each other, love and the lost art of storytelling.

I remember admiring my father-in-law [a man who is as kind-hearted as he is good] connect with my children in his own, unique way. I was grateful for this soft moment. As my children were swept away in story, my mind drifted to other things. I couldn't help but think of my son, a little boy who had done the world no harm yet was a victim to a deadly disease from which there was no escape. Although he appeared healthy, I knew that he was dying faster than the rest of us. And that broke my heart.

When I leaned down to kiss Mitchell’s forehead, he put his hand on the side of my face as if to keep me there and whispered, “I love you, dad.” My eyes welled as I whispered back, “I love you more.”

I then lifted my head and looked at a wise grandfather investing his time and loving attention with my children. I began to think about the passage of time and the natural order of life. It occurred to me that before we know it, age will catch up to this wonderful man and he will soon pass away. Whatever material possessions he may have accumulated will matter not one bit. Neither will popularity or prestige. The only thing he will take with him is what he has become. And the echo of his influence and choices will be the only lasting inheritance he will pass on to the generations that follow.

As I sat in this room surrounded by a family that I love deeply, I began to contemplate the echoes we make, the ripples our choices have on ourselves and others. They can build or destroy. They can be loud as thunder or soft as whispers. They can last generations or be silenced in less than one.

Author Peggy O’Mara said, “The way we talk to our children becomes their inner voice.” I found this to be true, at least for me. I hope that any inpatient or unkind word I may have ever said to my son was drowned out by how much and how often I tried to love him. And I hope that when my son was passing that he found comfort in his inner voice – that he looked forward with faith, not fear. That he knew he was loved by those of us here ... and the many that are over there.

As I peer into the abyss of death, unable to see with mortal eyes what exactly lies within, I can hear the echo of my son; his goodness, his love, his obedience, and faith. I hope that I carry his echo forward.

Losing my son (or anyone) is a painful reminder that suns set, seasons change, leaves fall, and so do our bodies. And if that's the case, I do well to remember that I only have a few minutes on this planet and I had better make the most of it. Of all the things we give and take, perhaps nothing is so important as the echoes we make.

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I took Wyatt to sports clips today. When we were asked to check in at the kiosk, I saw Mitchell‘s name on the register.  This was the same place Mitch used to get his haircut on occasion.  He always loved to get the deluxe package where stylists washed his hair and massaged his scalp. 

“... time is common to all of us –being in the moment is rare”

— Christopher M. Jones | Mitchell's Journey

During one of our visits Mitch said softly, “Dad, I really like it when they run their fingernails through my hair. Sometimes I almost go to sleep.”  I chuckled and kissed him on the forehead and said, “Me too!  Wouldn’t it be nice if someone could do that to us every day?”  Mitchell nodded as his eyes turned down as if to think about what I said. After a few moments of thought, he responded, “Yeah, but then it wouldn’t feel so good anymore because I’d get used to it. I like it better when things are rare.”

That sweet exchange and many other memories I had filed in the back of my mind began to wash over me the moment I saw my son’s name on the kiosk.  It was an unexpected, painful reminder that my sweet son is no longer with us.

I’ve been happy lately – but I admit, my heart deflated at this moment.  And when Wyatt tugged my arm and said, pointing to the kiosk, “Hey dad, look, it’s Mitchell’s name.”  I felt a second wave of hollowness in my heart – an echo in the caverns of my soul.  Suddenly, I felt a deep longing to have that sweet little boy back in my life.

I can see how reading this blog can be misleading to some who might think I sulk about with my head hung low, constantly picking at my wounds.  What they don’t see is 90% of my life is occupied with my wife and children, work and other dreams I’m pursuing.  When I sit down to write stories of Mitch, I’m opening the door to the public to my personal therapy sessions – except I’m both the patient and the therapist.    Writing is how I grieve and how I heal.  It works for me.  When I write, I’m creating a grief moment – and those are healthy for those who will hurt for the rest of their lives.  What made this encounter with my son’s name so difficult today was its suddenness.  There as no warning … no way to prepare.  It was a trigger, and because of it, I wept.  They were refreshing tears.  Healing tears.

While this tender breadcrumb pointing to my son’s absence may have pained my heart, I was grateful for the reminder of my son’s philosophy on things that were rare.  Mitchell’s heart was a treasure chest in which he kept the sweetest things.  I suppose this journal is a record of the things he kept close to his heart and a missive on the things he’s teaching mine.

Mitch had a maturity of mind and soul that was itself rare.  He was careful never to let things he loved be over-used or taken for granted and he always delayed gratification so that the reward was both rare and deeply appreciated.  One year, Natalie challenged our children to not eat any candy for a year, and she’d pay them $100.  Mitch was the only one who met the challenge.  I even offered to make Halloween exempt from that challenge, but he chose to be true to his original promise.  On January 1st the following year, Mitch earned a crisp $100 bill.  To little Mitch, it wasn’t the money that mattered as much as the accomplishment.

Even more than material things, Mitch treasured moments like none I have known before.  I have yet so much to learn from my son.  Today I was reminded to treasure things are rare.  Specifically, while time is common to all of us –being in the moment is rare.   By looking backward and examining my life, I can’t help but appreciate the moments that are yet ahead of me.  Because of Mitch, I’m going to take extra care to treasure moments – for they are special.  They are rare.