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Toward the end, I couldn’t kiss my boy enough. And when Mitch started to sleep a lot, I cuddled with him so he would never wake and be scared he was alone. There were times I wept so hard I shook the bed and woke him a little. I didn’t want to scare him – but in the quiet of my heart, I was terrified to lose him.

By this time, Mitch knew he was dying. At one point, he said, “I don’t think I can survive.” Those are some heavy words for a little boy to carry. When Mitch said that, I quietly turned my head as tears streamed down my face like Niagara Falls. I pleaded with God that I could take it all away – that I could die so my son could live. To my sorrow, life was not so kind.

I’ve spent the last several years examining grief. To this day, I still can’t conjure the words to describe the permanent trauma of watching your child slip through your fingers like a baby made of sand. I’ve tried to describe it in the past, but words are inadequate, much like trying to describe color to someone blind since birth.

I’ve discovered that grief is amorphous – and there are many faces of grief. Each face is my teacher. Here are five among many:

GRIEF THE DRUNKARD

Sometimes grief comes barging in the home of your heart, drunk and belligerent—an uninvited houseguest who always has keys to the back door. However much you try to change the lock, grief knows the locksmith. This kind of grief is difficult to manage because you can’t make sense of or negotiate with it. Instead, you learn to sit with it, help it calm down, and let its slurry sorrow burn off. The sooner you listen to what it has to say; the sooner sorrow turns sober.

GRIEF THE SERGEANT

Other times, grief is a demanding drill sergeant – bent on working your already weary heart to the ground. Sometimes the sergeant bursts onto the stage of your mind and heart while you’re in a meeting – it doesn’t care who you are or what you’re doing … it only demands your attention. Quietly, you lift grief through an emotional obstacle course as your knees and heart buckle. I’ve learned to listen to the sergeant and “do the work” – though painful; it always makes me stronger.

GRIEF THE GHOST OF REGRET

Regret is inevitable – and being human, we all carry regret. That thing we didn’t say but wish we did, the opportunity to spend time but didn’t, and a-million-and-one dumb decisions that lead to some form of regret. This face of grief isn’t just haunting; it’s horrifying—all those missed opportunities are gone forever. However, I’ve learned to sit with this ghost and find ways to turn regret into resolve. Resolve to do better and to be better. Then, that ghost fades away – and I’m all the better because of it, for I’ve learned to live a better way.

GRIEF THE PRETENDER

Sometimes grief acts like a pretender. I’ve seen others hide behind the veneer of their faith – as if being sad is a sin or a betrayal of sacred beliefs. They flex their muscles and try to seem strong, even super-human. “It’s been a month, and it’s time to move on. I must show everyone that I’m righteous and strong.” That only teaches ourselves and others to hide under a thin sheet of inauthenticity. Grief, the Pretender, is an imposter, a shadow pretending to be light. Sorrow is not only human but also our birthright. I would sooner trust a broken soul than a perfect one – for one is true, and the other is not. Losing someone we love hurts, and it hurts a lot.

GRIEF THE DIVINE TEACHER

Of the many faces of grief, this one is my tender teacher – for it has the power to turn vinegar into water – but it is the most solemn work of all. It asks deeper, more searching questions. This face of grief isn’t at all interested in “why me” or “why Mitch?” but instead turns the mirror inward. It asks the hard questions like, “Why not?” or “What makes you an exception to human suffering?”

I then bow my head in reverence of everyone who suffers. In this reflection, I have learned to look at my own soul and ask, “Yes, it hurts, but what am I to learn from this?”

Grief is a magic mirror, really, and though it appears to wear different masks – each of them are part of a greater whole. And if I’m listening, this divine face of grief shapes my heart and contours my soul.

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It had been two days since Mitchell passed away and I walked into my son’s room with a quiet hope in my heart everything was just a nightmare. Instead, I found my wife in quiet agony. There she lay on his bed holding his small teddy bear, which still bore the scent of our son.

Our home was suddenly barren, our hearts desolate.

Just a few days prior our home was filled with family to support us while our son was dying, each believing they were helping us in our hour of greatest need. What they didn't realize, what none of us realized, was that was the easy part, by comparison. Hell, with all its thunder and fury, happens in the aftermath … long after everyone leaves and you are left to navigate the bewildering wilderness of grief and desolation. It seems that everyone has it all backward - but that is a conversation for another day.

Contrary to what many think, holidays aren't as difficult as one might imagine. Oh, they’re plenty hard, but because you know it’s coming and you’re expecting it to be hard, you brace for impact and it somehow doesn't knock you off your feet. At least most of the time. While holidays are difficult, there are harder things still. It’s the ordinary Saturday mornings when we work as a family to clean the house. I look to the windows my son used to faithfully wash, or the floor he would carefully mop … and he is not there, nor anywhere. It’s the absence of ordinary things that take your breath away and bring you to your knees. It’s the empty bed, the vacant chair at the dinner table, the unfinished Lego projects, or spiral notebook with handwritten stories Mitch wrote; it’s the saved games in The Sims or Minecraft that show a world Mitch worked hard to build … forever frozen in time. It’s the ordinary stuff we miss, the very stuff we take for granted. Among its many layers, grief is a deep longing for the ordinary.

So, as I entered Mitchell’s room and saw my dear wife in pain, my heart sank to the floor. I missed my son with all of my soul – and though my heart wished otherwise, I realized my greatest nightmare was my reality. I fell to my knees and wept ... longing for the ordinary. I hurt for my tender wife and family. I hurt for my son. I later wrote in my journal, while pondering this moment of grief, “At the end of the day all we have is what we've done.” That saying came to my mind with great force and conviction. All the things we work so hard to gather unto ourselves, the riches of earth, and the praises of man can all be taken in an instant. I began to think about the memories we made and the things we did as a family and the love we shared. Though death can take away my son, it cannot take away the things we've done. Though death and absence can hurt our hearts and wrench our souls, it cannot take away the love we shared or memories we hold; for love and memories cannot be bought nor can they be sold.

At the end of the day, indeed, all we really have is what we've done.

It has almost been eight years since I lost my little boy … my little soul mate. Though the weight of grief isn't as constant as it was the first few years, there are times it can be as heavy and visceral as it’s ever been.

There is a Jewish Proverb that says, “Don’t pray for lighter burdens, pray for a stronger back.” It is to that end I pray; that my back will be made strong so that I might carry the inescapable burden of grief with a glad heart and cheerful countenance. Although in the shadow of the moon, or the quiet of my closet, or deep in my wilderness I weep for my fallen son, I can still feel the light of the noonday sun, and happiness returns as I recount my many blessings – each of them, one by one. Indeed, all I really have is what I've done.

I have three other wonderful children who I am also losing. Though I am not losing them to death, I am losing them to time. Before I know it, they will graduate from high school, go to college, find their own purpose in life, and start families of their own. Everything I have today, everything I’m tempted to take for granted, will soon no longer be. One day, in the not-too-distant future, I will long to have my little ones back with me.

I choose this day to make my moments matter, from here to evermore. I have come to understand with greater depth, because of my fallen son, all we really have is what we've done.

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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.

Tonight I took Ethan to his old elementary school. We wanted to see the tree planted in his brother's memory. There used to be a brick at the foot of the tree with an inscription in honor of Mitch. It's gone now, and the tree is more mature than the near sapling the school planted 7 years ago. It blends in among the others. Inconspicuous. Ordinary. It's purpose and meaning all but forgotten to a passerby.

That is to be expected, I suppose, for that is the way of things. We all live for a small moment, and then we die, and soon our story fades softly into the background of an ever noisy now.

I used to visit this little place, overwhelmed with emotion. Today my heart was as calm as a zen garden. I was grateful for this memorial while it lasted. It counted. It meant something to my family and me, and we are thankful to everyone who made this happen. Now it's purpose has been fulfilled and it can just be beautiful for the remainder of its days.

After we spent a moment at Mitchell's tree, I asked Ethan to take me around the school and share his memories as a young boy. He pointed to the jungle gyms he climbed and the classrooms he attended. He even looked to the ground at a hopscotch print on the asphalt and said, "those used to be much bigger." We both laughed.

As we walked around the corner of the school, near the cafeteria, I remembered Mitchell's school aide telling me Ethan would visit him every single day while he was having lunch and give him a hug. I know that meant a lot to Mitchell. Ethan was both loving and kind to his little brother.

As we made our way to the front of the school, our conversation had become a potpourri of memories and feelings. All of them beautiful and peaceful.

Our last stop was a small fenced-in area for preschoolers. That was where Ethan first attended that school. We stopped and talked about his memories, and my eyes welled with tears. There before me was my tiny boy-turned-man. I was so proud of the person he has become.

The longer I travel down my grief journey, I worry less about the physical monuments we create and more about the living memorials we become. After all, memorials almost never change lives. But the people around us do.

I do not care if people remember this tree and why it was planted. In many ways, I'm not so worried if people even remember my little boy's name in the years to come. But I hope the awakening, the deeper empathy, the habit of pausing to be in the moment, and the impulse to find gratitude echoes in the lives of people for generations.

What good are tears if they do not soften our hearts to love others more deeply? What good are heavy burdens if we do not allow them to make us stronger? Pain, though tender, is life's deepest teacher. These things can shape us into living memorials - so our lives become an echo of grace, gratitude, and goodness. To be an echo and a light, that is my hope for the remainder of my life.