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When Mitch was diagnosed, doctors and other professionals warned us marriages in our circumstance (the death of a child) don’t often last. Some were so bold as to say the odds were against us. It would have been neat if some of them said, “But here are some things you can do, or places to go, to keep your family together.” Instead, we received a double prognosis: “Your son will die, and you will probably lose your spouse in the process.”

I lost count of the times I wept at our kitchen table in the middle of the night, pouring over textbooks about my son’s muscle-wasting disease. I was reading books meant for doctors, and they offered brutal, candid characterizations about the realities in coping with progressive neuromuscular disease. I wanted to know the hard truths – no matter how much they hurt. I didn’t care about the scientific jargon many newly diagnosed families cling to. I just wanted to know the hard realities; I wanted to know what the hurricane looked like on the inside so I could prepare my family on the outside.

Fast forward seven years and my sweet son was home on hospice – at least a decade earlier than anyone anticipated. The hurricane I had prepared for never came – and we were met by a tsunami of other troubles. However, the few weeks Mitch was home with us were some of the most sacred moments of my life.

So, when Natalie and I stood in front of each other at our son’s viewing, we faced a new set of challenges. Everything we experienced up to this point was easy compared to what would follow. Even death is no match for grief.

Grief is a long, dark night of the soul. All the Sunday school lessons, derashas, khutbahs, and sermons we may have grown up with may be informative, but they do not take away the pain of loss. Dolling out spiritual platitudes and the casual dismissal of sorrow from people in our respective faith communities only seem to compound the weight of loss.

At one point, I wrote an essay entitled, “When there’s no room for grief,” which explores the often subtle and hurtful ways people respond to those who suffer. At least in my belief circles, the admonition for people to “mourn with those that mourn” isn’t a sticker we put on a fridge or scribble inside our scriptures so we can feel good remembering a phrase. Instead, it’s an invitation to do deep work – and it’s not easy or comfortable. Mourning with those who mourn implies you, too, will taste sorrow.

Over the years, I’ve discovered the beautiful, transcendent spiritual practice of intentional empathy – and what it truly means to mourn with those who mourn. It heals both the sufferer and the person trying to offer comfort. It doesn’t fix everything in a moment, but it does give us a moment to put a broken piece back in its proper place. For many, grief is the work of a lifetime.

Not long ago, I was reading a thread on Mitchell’s Journey. I care a great deal about this community and the burdens everyone carries – and I carefully read all your comments. It’s not my place to weigh and measure one’s suffering against another, and I’ve learned to respect all suffering as sacred. I recall a woman sharing a deep loss she recently experienced and how she didn’t know how to go on. At that moment, I recognized her words as my own at times. I saw a beautiful soul who suffered and, at the same time, thought to myself, “and yet you go on.”

The human story is filled with examples where, despite unimaginable heartache, we go on. We often tell ourselves, “I could never deal with ____.” Until we have to. What I’ve observed talking with thousands of you over the years is the human race is resilient – and we find ways to go on. But we don’t need to travel alone - and when it comes to mourning with others, it seems there are many who talk about it - and precious few who do it.

Just today, I recorded a keynote for a group in Israel who is preparing for a virtual conference in December. I’ve grown to know some of them over the years and admire the good work they are doing to help children who live with various forms of muscular dystrophy. In that address, I said, “I think it’s safe to say I’ve been to hell and back. But I’m back, and I have a story to tell – and that story is happiness is often found where we least expect it.”

Over the next few months, I hope to share stories where our family discovered joy in the in-between, ordinary moments of life and how some of those moments helped me find new ways to face another day … and go on.

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As Mitch began to drift away, I'd look at him with deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to someplace safe. A place like the children's books we often read to him – a place of hope and happiness, joy, and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day, and I was greatly pained therewith. When I took this photo, I had the distinct impression we were no longer counting the days, but the hours.

I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, "I am so sorry this is happening, son. You are so brave. I think sometimes God sends us the little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you." Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.

While Mitch slept, I wept.

I wept so hard the bed was shaking, and I worried I would wake him. The grief I knew then was but a foretaste of the pain to come. For death was the easy part … the echoes of emptiness and longing were a more painful hell yet to come.

I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead, I learned to turn my ear heavenward, to listen for secrets to the soul, and learn what I was meant to learn. Too often, people get hung up on asking the wrong questions – and therefore get no answers. They ask, "why would God do this?" When we hurt, it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we're being singled out or treated unfairly. But the last time I checked, life isn't fair, and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of tragedies. In the few minutes it might take to shake our fist at the sky and complain about or own lives, hundreds of people will have passed from this life to the next, and a great many more will mourn their absence.

The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.

At least for me, I've come to discover suffering and sorrow are an important part of life's learnings. Any more, I worry less about the origins of my sorrows – for what difference would it make? Surely God isn't caught off guard or surprised by the events in our lives. Whether He's the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion.

He could change the course of our sorrows if He wanted to. Perhaps the fact He often doesn't remove our sorrows is the most compelling message of all. I stopped asking "why me?" and began searching myself and ask, "Yes, it hurts, but am I listening?"

So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description, a pain that left my soul weary, bruised, and weak. I didn't want my little boy to go, for he was my tender son, and I loved him so. Though I prayed mightily for his safe return, the answer I received was, "No, my son, for there are things you must learn."

Thus began my journey with grief, down a bewildering path in search of spiritual relief. And though I still hear the deafening sound of death's terrible toll, I have come to understand our mortal bodies are but clothing to the soul.

When I listen to audio interviews I had with Mitch at the hospital and home on hospice, it’s clear to me now: he knew he was going to die. I already knew it but was trying to shield my son from fear. He knew it but was trying to keep my broken heart from falling apart. I wonder what we might have said to each other if we weren’t trying to save each other from sorrow. I wonder.

If I think too much about that, I fall apart. I have to let that go, though it is much easier said than done.

I’ve never known a child to love life with such a depth as Mitch. In the most curious ways, he was burdened by the kind of thoughts an adult might think, like, how he was going to afford a home, who he was going to marry, and the type of father Mitch wanted to be.

On one occasion, he asked me how mortgages work and said he was worried he wouldn’t make enough money. “My allowance is so small,” he said. I chuckled a moment, then swallowed a lump of compassion in my throat then said, “Oh, sweet boy, don’t worry about that stuff. It’ll all make sense in time. I don’t know how or why; I just know things seem to work out the way they’re supposed to.”

Mitch thought a moment, “But Dad, what if I can’t make it work?”

“I’ll always be with you, Mitch. You will never have to face life alone. I promise.”

With that, Mitch went back to building his Legos.

My son fascinated me, both by his purity and maturity. He drank in sunrises and sunsets like an old man wise in years and rich with experience. He understood that each sunset was unique, never to be repeated in all the earth. Because Mitch thought of his mortality often, I think part of him wondered if the beautiful sky he so admired at any moment might be his last. On the deepest level, he knew life was fragile and precious above all things.

So when I saw my son at the hospital struggling to feel good and doctors grappling with how to save his life, my heart sank below anything I’d ever experienced, then or now. The days at the hospital were long and the nights unbearable. Sometimes I wonder if he awoke in the middle of the night and heard me quietly weep in the dark corner of the ICU room.

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I remember running to get something from my car at the hospital, near the time I took this photo. The sunset was almost past, so I quickly captured it with my iPhone to show Mitch. When I returned to his room and showed him the picture, he said, “Was that today?” (see the next image in this post)

I could tell by the tone in his voice he yearned to see it with his own eyes. I could tell he wanted to leave the hospital and never return.

“Yes, son. You’ll get to see them again soon.”

My heart is glad knowing Mitch saw a few more sunrises and sunsets before his time was up. He treasured each of them.

I don’t know why we must watch loved ones suffer. I wish I could take it all away. I wish I had the healer's art.

Instead, I carry grief like an inoperable brain tumor. It isn't terminal, though sometimes it feels that way. But it does change my vision; as a result, I see the world differently, more clearly and compassionately.

I don’t suffer in grief like I used to, but tonight the gravity of grief is heavy. Tonight I walk on Jupiter and struggle a bit to breathe. That is the lifelong burden of losing a child.

While I continue to make sense of suffering, I don’t shake my fist at heaven, angry that I lost my son. Instead, I have a heart of gratitude to have been his father. I got to know a little boy who became my deepest teacher. I got to meet an angel made mortal, whose life forever touched mine.

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]