At the head of my son’s bed lay his favorite Halo mask and toy gun.
I purchased that mask when Mitch went to work with me, just before his last Halloween. He loved to have pretend battles with his friends; many of whom would call him “Sir” or “Master Chief” to show their willingness to follow his lead. While Mitch was physically weakest among them, he possessed a strength and influence that transcended muscle and bone. Mitch, unaware, was a quiet but natural leader.
Even to this day, almost two years since I lost him, he leads me in the battle field of life. Whether I wrestle with enemies of the mind and heart, or take refuge from a sudden onslaught of grief, Mitch has shown me what it means to fight the good fight and to endure suffering with a grateful, loving heart. Though I cannot always control the struggles of life, I can decide how to respond to those struggles. How I respond makes all the difference.
I draw strength and inspiration from my timid little boy who struggled to walk, breathe and eventually live. I'll never forget little Mitch laying in this very spot, saying in shallow breath, “I don't think I can survive.” That quiet utterance broke my heart then and it breaks it again today.
Little Mitch faced an implacable, fatal enemy; and though DMD took his life, he fought the good fight, and he won. Mitch reminded me the battles that matter most in life have less to do with the body and more to do with the soul.
He taught me how to look past my troubles and find gratitude with what I have. Mitch taught me whatever I have is enough … and when there isn't enough, to share anyway. Mitch taught me how to bear my burdens with a glad heart and cheerful countenance. He showed me a heavenly paradox … that to lift another’s burden strangely lifts my own. These lessons, and many others, have sunk deep into my bones.
My sweet boy fought the good fight, and though he died, he won. As I face different battles I hope to fight the good fight so that one day, on some distant field, I might see my son.
As Mitch began to drift away I would look at him with a deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to some place 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 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 grief 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 afflictions. In the few minutes it might take to shake our fist 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. That He often doesn't, sends a compelling message. The question I ask myself is, “Am I listening?”
So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description 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 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.
This photo was taken a few months after Mitch passed away, during the early summer of 2013. My kids were at Cousins Camp – a kind of family reunion for young cousins and their mothers. My oldest sister, Diane Wunderli, who was a faithful supporter to my family and little Mitch as he slipped into oblivion had purchased some floating lanterns and wanted to set them off in memory of my little boy.
She was one of the precious few who almost had a front-row seat to the horrors of losing our son. There were times she saw my little boy toward the end struggling and she would step away in tears. At one point she read a post about Natalie and I sitting on the hard floor in the hallway just outside Mitchell’s room so we could weep and not frighten him. When she read that post she gave us cushions to sit on and Kleenex to dry our tears. This woman was then, and is today, a living example of what it means to comfort those who stand in need of comfort. It is one thing to talk about doctrines, it is quite another to experience them. Having been on the receiving end of that profound doctrine has been humbling. Her comforting us when we were very much in need of comfort continues to pay emotional dividends to us today – and for that I am grateful.
I wish letting go of grief was as easy as releasing a floating lantern into the sky. I wish that a single memorial might assuage my sorrow and allow me to let go of all that hurts. But life is not that easy.
I have spent a great deal of time thinking about grief rituals and why we do what we do when we lose the people we love. I don’t know the answers – but I am beginning to understand that each grief ritual is as unique to our souls as our fingerprint or DNA is to our mortal bodies. What’s more, how we manage our grief is a very personal journey – and, so long as we don’t hurt ourselves or others, there seems to be no wrong or right way to grieve. Unfortunately some people who sit comfortably on the sidelines of grief, thinking they know best, confuse the hurt someone feels for hurting themselves. They try alter their grief path by saying, “You’re stuck.” Or “You shouldn’t feel that way.” Or, “it’s time to move on” and all manner of idiocracies.
I have discovered it is far better to listen with love and tell those who hurt you care. We can no more force the healing a broken heart any more than we can force a deep cut to heal. But we can create an environment where healing can take place … we can clean and dress our wounds carefully and keep them free of harmful things that might infect us or prevent healing. But at the end of the day emotional healing happens from the inside out.
There are so many ways I've seen others grieve … I know a woman, for example, who lost her husband and has made a lovely treasure chest which will slowly become home to treasured items that belonged to him. When the chest is full, the rest of his belongings will likely go. Others choose to keep everything. Some push everything away and want nothing to remind them of their heartbreak. I see people regularly visit the cemetery and spend time near their loved ones. Some write songs while others decide to take up arms in a battle to beat the thing that took their loved one away. Pat Furlong, for example, lost two of her sons to DMD. She lost two Mitchell’s. I cannot imagine her sorrow. Yet in her own grief journey she managed to turn rubble and ashes into beauty and hope; she started Parent Project Muscular Dystrophy, which is now a beacon of light and hope for families who face the same disease that took my little boy, and hers. Still, there are others grieving who are simply treading water trying not drown in the deep and dark well of sorrow … people whose hearts are so broken getting out of bed each day is a monumental victory. There are so many ways to grieve – and each grief journey is unique. And that’s okay.
In ways I have never imagined, I am beginning to see beauty in grief. Not that grief is a pleasant thing – to the contrary, grief is a bitter cup from hell. But grief is also an evidence of love – and that alone is paradoxically beautiful. Each tear is a memorial of profound love and longing. Each heavy chest and sunken heart is a camouflaged prayer to heaven that our loved ones will know how much they are missed.
Grief is not only about the pain of loss … it is also a very real wrestle of the soul with a seemingly endless inquiry of “what ifs” and “Did I do enough?” Though my heart is still heavy over the loss of my son I have come to terms with a certain truth: despite feelings of self-doubt and anguish over what might have been, the best we can do is quite alright, in the end.
I’m still contemplating grief rituals - what they mean and why we do them. All I know is they play an important role in healing. I wish I could release my grief like my sister did of this lantern. My own grief journey has taught me that grief is not something I can simply let go, for it is part of my soul now in ways only God can know.
It was so hard to see our son slip into oblivion. I’ll always remember how lovingly Natalie held Mitch as he struggled to breathe and keep balance. Mitch was taking medicine to erase from his mind oxygen hunger – without it he would be panicked, breathless, and gasping for air. It was a medicine of mercy. As Mitch descended further into the abyss he began taking other medications to erase from his mind the pain of organ failure and the panic of dying.
We were not prepared for such things; we knew how to make macaroni and cheese, play UNO and swim in ponds. We knew how to laugh and play, do homework and tell stories at bedtime. We didn't know how to manage the symptoms of death – let alone watch our little boy die.
My dear wife demonstrated a bravery and steadiness that humbles me to my core. She was soft and tender to Mitch and never did anything to scare him – even though in her heart she was terrified beyond measure. Occasionally I would find her in our closet weeping next to a pile of tissues – but around Mitch, she was steady and sure.
Although my sweet wife and I did our best to prepare for the holocaust of losing our son, I discovered it wasn't possible to intellectually or emotionally prepare for such a loss. Yes, I knew it was coming and I wept in sorrow anticipating the loss of my son – but, with all the sorrow I knew at the time, I at least had the hope of another moment. There was always hope of another something – and that kept the true weight of grief at bay. It wasn't until Mitch was gone that the true weight of grief broke every part of me. All the sorrow I knew before, anticipating his death, was but a foretaste of a much deeper pain to come. That was when my heart was hurled into oblivion.
I have learned the true hell of losing a child happens in the aftermath, long after flowers and casseroles – that is when it’s hardest. And it is hard for a long, long time. It isn't hard for want of sympathy, it is hard because he is gone. Really gone. Days seem to stretch eternal and night, with its promise of sleep, is a welcomed escape from oblivion and the heaviness of grief.
For the next year and a half I found myself slipping in and out of oblivion. The first 12 months were absolute oblivion – there were more moments of tears than no tears. Thankfully that is not the case today. I still cry every day, but I no longer cry all day.
I find myself slipping into oblivion at the most unexpected times. Although oblivion is no longer home to my broken heart, it is a second home and my heart will take residence there without any warning at all.
In fact, just yesterday I was in a business meeting discussing many important topics related to our future as a business. At one point, without warning or provocation, I was taken over by a profound sense of loss. “He’s gone. Mitch is actually gone.” I found myself quietly gasping for air thinking to myself, “I can't believe he’s gone.” It was a wrestle of the soul. I tried to push those feelings aside so I wouldn't erupt in tears in the middle of our meeting in front of the other men. By the time I reached my office and shut my door, the floodgates opened. I wept as though I just lost him.
I don't know how to grieve any more than I know how to watch my child die. I just know how to make macaroni and cheese and play with my kids. I know how to cuddle by the campfire and dream up bedtime stories. I don't know how to live without Mitch – but I don't have a choice in the matter. Each day I take a step forward – and each day is a little better than the day before.
I miss my son – every moment of every day I miss him. I wish I didn't have to go through this. And though I find my heart in oblivion at the most unexpected moments, I'm somehow able to find my way back to that path of healing, that path of peace, and thankfully I haven't lost any ground.
Somewhere on the other side of all this hell, is heaven. I seek after that.