Mitchell was not okay.  Sweet Natalie helped him drink from a straw as my sister held his body steady.  I took this photo on March 1, 2013, at 1:42 PM.  A few hours would pass before he ate his last meal and then slipped into a sleep from which he’d never wake.  By midnight, he was gone.

Just a few days prior, Mitch said in a slurry voice while lying in his bed, “I don’t think I can survive.”  He closed his eyes and we thought he was sleeping – unaware he could still hear us crying quietly at the side of his bed.  A few minutes later, Mitch trying to comfort his mother said, “It’s okay Mom.”

Last night marked the 10-year anniversary of my sweet child’s passing.  Ten years of grief.  Ten years of gratitude.  Ten years of growth.  Ten years of heaven and hell.

Something remarkable happened in his room that night.  As Mitchell’s body started to shut down, the muscles in his face began to relax in a way I’d never seen before.  Near the end, his face was almost unrecognizable.  His rib cage began to bulge – as though his heart had enlarged, and his body looked deformed.  Little Marlie, his puppy of only a few weeks, curled under his hand as if to comfort him.  I have a sequence of photos that show Mitch softly moving his fingers through her fur.  He couldn’t open his eyes anymore, but he would softly squeeze our hands when we spoke to him.

It broke my heart.  I struggled to find meaning in the moment as darkness surrounded me.  By this time, I’d been crying for days and my lungs were so very sore – it felt as if I had the flu.

As each hour passed, little Mitch inched closer to death and the spirit of his room began to transform into something that felt like a busy train station.  I felt the presence of others I could not see.  They provided no comfort to my weary soul – I only sensed a gathering.  Later that night, several different people came to our door and dropped gifts off for Mitch – unaware he was actively dying.  They send me text messages to let me know they’d dropped something off - and each, in their own way, commented on how they felt.  One of them said, “I don’t know what’s going on in there, but I felt like I was walking through a crowd of angels.”

I don’t pretend to know what happens in that place beyond the hills.  Any more, I have more questions than answers.  But I’ve also had experiences that I cannot question – only wonder in awe that there is more to our existence than meets our mortal eyes.

Since my little boy died, a large part of me has died also.  And I’m glad of it.  In the last 10 years, I’ve learned that we must die a hundred times during our life – if we’re to truly be alive.  I know so many good souls who go about their days checking boxes, living vein routines that seem more like ruts, going about their lives like zombies, yet thinking they’re alive.  Sometimes it’s easy to confuse existing for living.

“If writing was my therapy, curiosity was my therapist. Curiosity taught me to ask better questions – questions that sought to understand the meaning of my experiences and see connections between them. ”

— Chris Jones

Grief, which is trauma in slow motion, transforms us for better or worse.  Some point to their trauma as an excuse to be hateful, disloyal, or stuck in a lesser life.  Others find ways to use that hardship as if to polish the gemstones of their soul.

Early in my grief journey, I learned to surrender to grief moments, not fight them.  I didn’t just surrender to grief moments; I made time and space for them, often when writing.  Each time I grieved, a part of me died, and a new part of me came alive.

If writing was my therapy, curiosity was my therapist.  Curiosity taught me to ask better questions – questions that sought to understand the meaning of my experiences and see connections between them.

For years, wave after wave of sorrow came crashing down, thrashing my soul.  Sometimes it was hard to breathe. But I surrendered my mind and heart to the ebb and flow of the emotional tide.  Each time, I’d find my way to the shore.  Sometimes, I’d find others drowning in grief and I’d tug them back to shore, too.

10 years have passed.  Every so often, the realization my son is gone hits me.  It’s not like I forget.  I think about Mitch every day.  But knowing something has happened and feeling its consequence are entirely different experiences.  When that realization hits me, when it brings me to my knees, I do my best to surrender to all the feelings.  Rumi taught, “The cure to pain is in the pain.”  I have experienced the wisdom of his words.

Grief is so much more than being sad.  I’m not even sure it’s an emotion; I know it feels like it, but I sense it’s much more than that.  As far as I can tell, grief seems to be a spiritual and mental struggle to adjust to absence.  We don’t grieve for things we have – we grieve for what we lost.

Today, my heart grieves for Mitch.  Yes, yes, I’ve heard it all before: “Do not cry, I’m in the other room” or “Life is but a blink in the eternal scheme.”  Those platitudes are hardly useful to those who grieve.  The last time I checked, life is the longest thing I know in mortality.  If you want to help those who hurt, don’t talk to them about blinks and eternalness.  Instead, honor their suffering by mourning with those who mourn, in the present moment.  Hold space for their brokenness as they squint through tears to find their broken pieces and put themselves back together again.  The battle of grief is difficult enough – and is made more complicated when those close to us don’t honor the pain that is present.  Recognize the sacredness of suffering – and you may discover something special about your loved ones and about yourself.

So much has changed since I lost my boy.  The truth is, I’m more joyful than I’ve ever been.  I see further than ever before.  The pain that carved caverns in my soul has made space for a kind of joy and aliveness I never imagined – not even in my sweetest dreams. 

Today, I sit in the contrast of grief and gratitude as I celebrate my little boy.  My deepest teacher.

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I knew time was short and midnight was near. Death was coming, and all I had was the moments that remained. How many moments left was impossible to know.

The ice upon which Mitch tread was terribly thin. His cardiologist said he was at risk of sudden death; so not a moment passed that I didn’t worry that very second might be my last. When I peered into my tender son’s eyes, all I could hear was the cracking of the ice beneath him.

“Dad, will you watch a movie with me?” Mitch said softly. Swallowing the lump in my throat, I replied, “I would love to, son.” Mitch grabbed his tiny puppy and whispered, “We can put Marlie between us and both cuddle with her.”

“I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.”

— Christopher M. Jones | Mitchell's Journey

Oh, we cuddled that night. We cuddled like we were the last two people on earth, bracing for a meteor to wipe us out. As Mitch snuggled into my chest, Marlie rested between us, ever faithful to her sick friend. Little Mitch was soon caught up in the movie … and as much as I wanted to enjoy the movie, I could not. All I could think about was the cracking ice and the deep, dark waters below. Tears streamed down my face, and my heart ached in ways I never imagined. I had never known such sorrow.

I remember saying a prayer in my heart in search of comfort, “Father, where is your hand in all of this suffering? Please, give me eyes to see. I have faith in you. I believe.” I learned years ago that “As soon as we learn the true relationship in which we stand toward God (namely, God is our Father, and we are His children), then at once prayer becomes natural and instinctive on our part.” And that, “Many of the so-called difficulties about prayer arise from forgetting this relationship.” The moment I discovered that truth, my prayers became more personal. More genuine. More effective.

The answers I was looking for didn’t come all at once. Peace would come and go like the ocean tide – and I was not spared from sorrow, neither was Mitch spared from death. But peace would come and give us a measure of rest. And when it came to having eyes to see, my eyes were opened, but slowly. Like mortal eyes, my spiritual eyes needed time to adjust – but soon I began to see tender mercies that I was previously blind to see.

I am no fanatic or a zealot, but there are some things I know, and I know them for sure. I know that despite our suffering in this life, we are never left alone … though we may be tempted to feel that way from time-to-time. God is never surprised or caught off-guard by the events that unfold in our lives. In fact, I’m convinced that Heaven walks before us and paves the way for tender mercies – so that we might find comfort in our hardships. But hardships are essential to our spiritual growth.

I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.

I miss this little boy. Though I would have done anything to keep Mitch with me, I have discovered things I did not previously see. The gift of sight, to see things right, is something I don’t take lightly. Peace, it seems, doesn’t come from things … it comes from what we see.

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I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.

On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.

Neither of us knew he had 48 hours left.

Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.

I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.

Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission. 

Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down. 

Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out. 

You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.

At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.

 

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Everything was falling apart. Mitchell’s vitals were on a steady and quick decline and all he wanted to be was a kid.

Death was clawing at our door and would soon find its way in. We had reached a point where we began to administer powerful drugs to mask the pain of organ failure. He was already on medication that erased from the mind oxygen hunger; else he would have felt out of breath, as though he were vaguely suffocating. With each dose of these new drugs, Mitch became more and more sleepy.

“I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.”

— Christopher M. Jones | Mitchell's Journey

We were in the middle of a dilemma: we wanted every minute we could have with Mitch, but we didn’t want him to suffer. To withhold medication so he would remain awake would have been selfish on our part, and would have caused our little boy pain. In order to spare Mitch unimaginable agony, we had to let go of what we wanted so that he wouldn’t suffer.

Mitch began to realize his medicine was making him sleepy, so he started to resist each dose because he wanted to be awake. He wanted to live his life – for he was glad to be alive. With tears running down our faces, we would explain to Mitch that the medicine would keep him from hurting. “But I just want to be awake. I just want to live,” Mitch would say in a soft, breathless tone. Then, not wanting to suffer, he would then take his next dose of pain medication and fall into a deeper sleep than the time before.

I can’t count the number of times I knelt, with bruised knees, at the side of Mitchell’s bed pleading with our Father to spare my son. And if he would not be spared, I begged that He would help my little boy to not feel scared or alone … that he would be given a measure of peace and understanding beyond his young years.

I also prayed that my Father would strengthen my feeble back so that I might learn to carry what I must. A weaker man he could not have chosen to bear this burden … for I was then, and remain today, imperfect and flawed. I didn’t feel capable of carrying such things.

So as I sat across Mitchell’s room, I witnessed two tender mercies that served as an answer to my prayers. Just after his dose of medicine, baby Marlie placed her head on Mitchell’s lap, ever offering tender affections. Natalie, my dear wife, sat softly next to Mitch and comforted him with a love only a mother can give. With her every gesture, it was as if she said, “Sweet boy, don’t be afraid, I will walk beside you.” I marveled at how she became a pillar of strength for my son and family. When I was a jellyfish, she was made of carbyne.

In this very moment, I suddenly saw life through heaven’s eyes. Though I witnessed my little boy suffering the effects of being mortal, I also saw two angels who walked beside my son … tender mercies from a Heavenly Father who loved and cared about Mitch. In that moment, I was overwhelmed with gratitude and understanding.

Losing my son has forced me to dig deep. Yet, this hardship didn’t weaken my faith, it strengthened it and rooted out the stuff that got in the way. Despite the darkness of death and the weight of grief … which has been soul-crushing … I am a personal witness to tender mercies. They exist. They are as real as anything I know.

Though I am still blind and weak, I have a Father who patiently walks beside me … ever generous with tender mercies. I pray every day that I will have eyes to see. For if He was there for Mitch, it might very well be that He is doing the same for you and for me.