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.
A few years ago, I marveled at how gracefully my young daughter carried her younger brother on her back. The waves were too big for Mitchell’s weakened muscles, and earlier that day, Mitch privately confided to me, almost with a whisper, “Dad, I’m afraid of being swept into the sea.” Laura-Ashley, sensing Mitch wanted to play with her, offered to help him so he could experience the ocean in the safety of her arms. This image, this tiny moment in time, fills my eyes with tears of gratitude.
It feels like yesterday she was carrying Mitch on her back. Now, my sweet little girl carries a child of her own, and soon, Natalie and I will become grandparents. My heart is bursting with joy for my sweet daughter and her loving husband.
About 13 years ago, I started collecting children’s books for my future grandkids. I have since taken them out of storage and started practicing my dramatic readings and homemade sound effects. I can’t wait to read to them - and more than that, I can't wait to feel their little heartbeats as they fall asleep in my arms.
More recently, over the last few months, I’ve had a brooding impression that a grandchild might be near; so much so, I was pointing out little baby clothes to Natalie with a kind of dreamy anticipation of being a grandfather one day. It’s difficult to describe how excited I am to love and hold my future grandkids.
Laura-Ashley graduates from nursing school in April and is expecting in May. I’m proud of her on so many levels. She works in hospice, and I am humbled by how she serves her people: with dignity and respect, of course … but also with personality and authenticity. She has a unique relationship with each of them, and she becomes a bright part of their day. I remember what Mitchell’s hospice nurse meant to Natalie and me, and to see our daughter become that for others is humbling. There is so much to love about my not-so-little girl: I admire how Laura-Ashley makes friends everywhere she goes, I giggle over her unusual description of things, I cherish her adorable sense of humor, and I love her tender heart.
Nobody ever told me how being a dad would feel, and I wouldn’t trade this feeling for anything. Today, I’m overflowing with all the feels.
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.
Photos are like postcards from a time long gone.
I’ll never forget this warm autumn evening when Luke put his arm around his best buddy and said, “I’m glad you’re my friend, Mitchell.” I was about to walk down the trail of our secret forest so they could play – but when I overheard them talk about video games and some new nerf war strategies, I lingered at the edge of the woods so I could listen to them dream without a care in the world. For a minute or two, the little boy in my heart sang and danced like an invisible ghost playing vicariously with them. Though not a child, for a moment, I wanted to be.
As a father, I smiled on the inside – knowing these two children were right where they were meant to be. None of us knew how soon Mitch would meet with catastrophe, and we had no idea how soon we’d have to say goodbye. That same arm wrapped around Mitchell’s neck in this photo would soon be stretched outward, holding his friend’s hand, barely conscious, as Mitch struggled to breathe. These two boys made of clay would have to face some very adult realities. The innocence of childhood soon rebuffed by their mortality.
When I took this photo, I had no idea the hell that soon awaited me. Neither did I imagine discovering some deep and beautiful treasures filled with light – treasures that can only be found in the darkest shadows of grief, even the pitch of night.
In the most curious of ways, Mitch and Luke’s paths seemed destined to intersect – and for as long as I live, I’ll thank heaven for connecting these two beautiful souls. At first, they seemed like ordinary boys that just happened to be neighbors. Soon, they went from casual friends to best friends. They were each other’s confidants and helpers. And in the blink of an eye, they became my teachers.
This past summer, I have spent a great deal of time in our secret forest building retaining walls by hand, cleaning up the trails, and turning that place into a quiet sanctuary for the soul. It has been a magical summer of healing, repairing, and growing. That tiny forest in our back yard has become a place to separate, meditate, and think deeply.
As I worked in the forest, I wondered what I might write Mitch, if I could send a postcard. Sometimes I write little cards in my heart and send them to the sky. “Hi Mitch, I miss you. You flutter in and out of my mind – soft as a moth – and oh, I wish you’d stay. What I would give to be with you, for just one more day.”
Sometimes, deep in my heart, it feels like he writes me back.
Sometimes.
There are other times I wonder what I’d write my younger self – knowing what I know now. Would I try to influence the choices I made and take a different path? Absolutely not. I would live my life again and again, even to infinity, so that I could know and love Mitch. Has his life brought me pain? Yes. But his existence was also beautiful. This young, broken boy has become my teacher—grief my tutor. Class has not ended for me, and I will be a student of love and grief until my days have ended, and I journey to that place beyond the hills.
Until that day, I will treasure these postcards from the past and look for the lessons buried in a potpourri of love and sorrow. In truth, I can’t wait to discover what I’ll learn tomorrow.