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.
My dear wife and I had just delivered the most difficult public address of our lives. It had never occurred to us that parents don’t typically speak at their child’s funeral because emotions are so very near the surface. For some reason, we did.
After the funeral service we made the somber journey to the cemetery. My little son was in the hearse in front of us and all I could think was, “He must be so cold and scared and lonely.” I had those same nearly schizophrenic feelings when I was 19 years old and drove my father’s casket alone in the back of a pickup truck from Edmonton to southern Alberta. It was snowing outside and I agonized that my dad was cold and I wanted to protect him like he so often tried to protect me. I cried a lot on that long drive – I was young, sad and very much afraid. Although those feelings of wanting to protect my father were strong then, they were so much more intense toward my son. What you see here was the worst commute of my life.
As we followed our little boy I couldn't help but also think back on my life with Mitch. Instantly I had feelings of guilt and grief and a longing to hold him such that I had never before known. I cried on this drive, too – and my soul cried out even harder.
I couldn't imagine it then, but I see it now: death and dying, the funeral and all its preparations, as difficult as they are … that’s the easy part. It is in the quiet of things, long after death has come to steal away that which is most precious … it is when the dust settles and the world spins madly on … that is when the struggle truly begins.
I have heard many who wrestle with grief share feelings of personal guilt over a million-and-one things they wish done differently. I understand those feelings because I have felt them, too. I wrote in a post last December, “That list of “what ifs”, however counterfeit and scattered with lies, remains glossy, persuasive and deceptively wise.”
Though I may be tempted to feel guilt for what might have been, or perhaps even should have been, I know I always had the welfare of my family at heart and I did the very best I knew how. I wasn't perfect, but I was perfect at trying – and that is good enough for me. Grief is hard enough – guilt makes grief more difficult. Guilt is a lot like fire: if it is properly managed it can wield great power and affect change. If mismanaged, or gets out of control, it can burn us and cause deep scars.
Yet there are so many moments that invite feelings of guilt: from the foolish things people say, to those who suggest we’re grieving wrong … because we’re not doing it their way. To all of that nonsense I say, ignore it. It is easy to critique the grief of others for those who never knew it or bore it.
I don’t feel guilty for having good days or moments of happiness – as though I've betrayed some unspoken rule of grief. To the contrary, I seek after such moments daily. We are made to find joy – and joy is what I seek.
On the other side of the grief spectrum there are some who suggest, “Mitch wouldn't want you to be sad.” Yet, I am sad that he is gone. I don’t feel guilty for grieving or feeling deep sorrow over the loss of my son … for I believe he understands my grief … that grief is the language of the heart and points to unspeakable love and unimaginable loss. Why feel guilty for that? I don’t feel guilt for grieving and I never will.
Mixed in the many layers of grief are the questions “Why me? Why this? Why?” We may never know the answers … at least in this life. But, I can’t help but think there’s a relationship between grief and grace. At least to me, it seems if we endure our struggles well, grief can become our teacher and open our hearts to a deeper compassion toward others.
Though I wish the death of my son never happened, it did. Shaking my fist at God in anger won’t change that … in fact, such anger would change me … and I don’t want that.
I’ll never turn my fist toward God. Instead, I turn my ear toward Him and do my best to listen. And, when I slow down and give my heart some space, I am convinced grief is a key to grace.
Ever since he was a young boy I have taken Mitch (and my other kids) to work with me from time-to-time. When Mitch was especially tiny I would make pillow & blanket forts under my conference room table and he would cuddle in his little cave of comfort to watch movies, play with toys and eat treats while I went about my meetings for the day. I would take him to lunch and we would talk about the big stuff that was on his little mind. I treasure those memories greatly. As Mitch grew older he no longer sat under my desk but at it with a computer building digital forts in Minecraft.
This is a photo of Mitchell’s last time at work with me. He was just denied a heart transplant and I remember sitting across my desk looking at my sweet boy worried about his future. I had no idea the darkness that would soon come into my life. I saw a sweet young man who just wanted to live a normal life and enjoy the simple things.
I thought we had more time with him. I have come to learn the hour is always later than we think. Time, if ignored or mismanaged, is never on our side and becomes a thief of opportunity.
I have spent almost the last three years of my life helping to lead a company to launch that is aimed at helping people close the gap between what they value and what they do. I believe it is an inspired company and I hope it helps people live a life of greater meaning and less regret. Little Mitch was too young to really understand what my company was about – but it was because of him that I invested my time there. My family is one of my highest values, and I sought to live my values the best I knew how, and at the depths of my soul I want to help others do the same. So there Mitch sat at my desk … he just loved being around me and more than anything, I loved being around him. I was simply trying to live what I valued.
On my bookshelf is a statue of hands, one lifting another. I put it in my office as a symbol of why we exist as a company – but more importantly, a symbol of the desires of my heart. What good are hands if we don’t use them to lift others up?
Since the loss of my son I have not only struggled with bewildering grief, I have suffered the wrath of foolish men who were blinded by pride and arrogance – and sought to tear me down. While I’m no pushover, for a while I believed them and I wondered if I was capable of anything at all. A season already darkened by death became even darker by the destructive actions of others … others who knew better. I just held on the best I knew how, remembering they were human, too. I prayed to have a forgiving heart. What kept me going was remembering a profound lesson Mitch taught me: “Be nice to each other and be glad you’re alive. Nothing else matters.” I am grateful my son taught me to see past my troubles and to remember what really matters.
I have discovered grief is much like a cocoon. While we are wrapped up in grief a transformation happens whether we like it or not. At some point we will emerge from that cocoon, having become something different than we were before. What we become is largely up to us – shaped by the decisions we make during that transformation.
Today, I can feel the cocoon of grief lessen its suffocating grip on my soul. I still hurt. Sometimes deeply. But, something is changing … and I feel it is good. During brief moments of profound sorrow I wondered if there was any hope at all … hope of a life beyond such a terrible loss. To my relief, I have discovered there is.
I am still going to write of grief: the grief I feel and the grief I felt. I will share hard things and soft things – and everything in between. And as I emerge from this cocoon of grief, I will share my experience with that, too. Whatever happens during this transformation, whatever I become … I will always miss this little boy. I will always long to hear his voice and touch his face. I will always miss his companionship.
One thing Mitchell’s Journey has taught me is if we live what we value, when everything falls apart, we won’t.
I took this photo at the cemetery one evening as I was writing about my son and our family’s journey through the wilderness of grief. I have spent some critical time thinking about Mitchell’s Journey of late … what it is and what it is not. I hope this blog, for as long as it exists, is a place committed to honest and sincere reflections on hope, healing and finding happiness. I hope, also, it is fearlessly committed to telling the truth about sorrow and its many setbacks. The truth is, the journey of grief is not an intellectual journey nor is it a linear sequence of events and you're done. Grief is a tangled ball of yarn.
Though this page began as a quiet account of my son’s journey with Duchenne Muscular Dystrophy it took an unexpected turn as it documented his death, our family’s journey with grief and now explores past experiences we had with our son. Perhaps what’s most interesting about Mitchell’s Journey is the vast majority of its followers are not afflicted with any disability at all but are somehow finding meaning with their own journey through life. My wife and I have been deeply touched by the private messages from others, who come from all walks of life, and have shared their story and how Mitchell’s Journey has helped them in one way or another. The moment someone decides to make a course correction in their lives, to love more intensely, to forgive more freely, or to live more fully, Mitchell’s Journey goes from cyberspace to real space – and that is well enough with me.
Though I write of deep grief, I do not live in a constant state of grief. Healing is happening. But healing hurts and I write of that, too. The hardest stories have yet to be told – and I will write them not because I'm stuck in those moments, but because others may be encountering those very moments at this moment. Perhaps those reflections will serve as a candle to others as they journey the dark wilderness of grief.
Among the recurring themes of Mitchell’s Journey are discussions of faith, making sense of sorrow, and reflections on love and loss. I suppose one could add to those themes the singularity of grief, that after all is said and done, the journey of grief is travelled by one. Although nobody can do that work for us – just because we must carry our grief alone, we need not walk alone, nor does the wilderness need to be completely dark. I have seen many of you respond to others who post on Mitchell’s Journey and are hurting – and each of you who do so become a candle in the wilderness. I think that’s beautiful.
I am still a bit surprised, at times, how lonely the journey of grief can feel. I have found that people can do or say things that might complicate the healing process were I to allow it. Some, speaking from the depths of their own pain have said things like, "just be glad you had 10 years and not 10 hours" or some who have lost a spouse say "at least you have/be grateful that you have your wife to lean on" and a million other variations of a familiar and insensitive theme. Rather than taking offense at their volley of sorrow, or comparisons of grief, I just recognize these people are still deep in their own wilderness. I don't know their sorrows any more than they know mine – I only know grief is a heavy burden for all who bear it. I only know they hurt and I wish it weren't so.
I hope for as long as I live I can be a candle in the wilderness. For I have discovered the wilderness is vast and deep and exceedingly dark at times. I have also discovered what a little light can do.
The truth is I don't know what I'm doing here. I’m not a writer or a public speaker or anybody of significance … I’m just a daddy who misses his son with all of his heart. But as long as I have a heart, I will share it … because where there is love there is light and where there is light, there is hope.
To all of you, who love and lift others and have become a candle in the wilderness, shine on.