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.
This was the summer we took our kids park hopping. I am sure many others do this, but it was a special family tradition we liked to call our own. Each Monday evening we’d pack a picnic and drive to some random, undiscovered park and explore the jungle gyms and grassy fields and have dinner there. Because each park was unique it never got old.
Mitch had the most endearing, mischievous side to him. Though I am terrified of spiders, I find myself catching and keeping them to study and observe. Mitch, knowing my fear of spiders, would often put large plastic spiders in strange places around the house. He would never put them in obvious places, like in the middle of a room for all to see. Instead, he put them in the shadows, barely out of view … or in corners and other places you would most likely see them. I fell for every one of my son’s little traps. When I would stumble into one I would always scream out in terror – only to hear Mitch down the hall or in another room giggling that I fell for another one of his shenanigans.
On this evening we were visiting some undiscovered park. Little Mitch saw that Ethan was about to drink from a fountain. Knowing the water pressure was unusually high he quickly approached Ethan from behind and turned the water on full blast, squirting his brother in the face. Mitch ran away laughing. Ethan was a good sport and laughed with him. They were the best of friends.
My memories with my family are as warm to my soul today as the evening sun was on my face back then.
I've never felt it a burden to spend time with my family. To the contrary, I have always considered time with them an investment that would pay a lifetime of dividends. When I look at images like this, and remember those good times, I cash one of those emotional checks and my heart is filled to overflowing with gratitude.
Perfect moments, you know … the kind you wish you could bottle up and save forever, they come and go so quickly. I wish they’d stay forever – but I know that’s unreasonable. I guess that’s why I’m always on the hunt for them. I suppose, after all, that is how it should be … because what is rare is valuable. To think that our children are more than rare … they are unique in all the universe … which makes them valuable beyond mortal description.
Just last night I took Laura-Ashley on a daddy-daughter date. We went to dinner and a movie and had a great time talking. As we drove home we passed the cemetery and she said when she takes the bus home from school she’s always sure to sit on the side of the bus where she can see Mitch. I smiled and said, “Mitch sure loved you, Ash.”
We both talked about her little brother for a while; we laughed at the funny things he did and said and recalled our favorite adventures together as a family. I wasn't sad (well, deep inside I’ll always be sad that he is gone) … but my heart was so happy and it was overflowing with love and appreciation for my family. I was grateful that I had Mitch – even if only for 10 years. At the same time I was grateful I had Laura-Ashley – and that she is turning into a wonderful young woman with whom I am so proud. I told my daughter how much I loved her and how proud I was of her. I hope she felt the meaning behind my words – for words, too, are mortal and flawed.
I am grateful for perfect moments back then and today. I do all that I can to scoop them up and treasure them before they evaporate. And while my cup is cracked and tattered with grief and weakness, it still runneth over … far beyond what I deserve. And I am grateful.
The night before Mitchell passed away we sensed time was running out. As the sky quickly darkened the air grew eerily cold … and with each breadth, we felt a heavy, somber feeling grow within our hearts. That abyss that was inching to devour our son had its mouth stretched wide and was beginning to swallow him up.
We were preparing to cuddle with Mitch in his room and read him stories to comfort him when we received a call from his best friend and next-door neighbor who wanted to see if he could play. Unaware that Mitchell was already slipping away and was coming in and out of consciousness (mostly out), we asked this young boy if we could speak to his mother. We told her Mitch didn't have much time and that perhaps her son would want to come over one last time. Within a few minutes of that call, this young boy came over to say goodbye to our baby, his best buddy.
Mitch absolutely loved Luke. Whenever he heard his friend knock on the door Mitch would yell out, “Lukey!!!” Mitch was always excited to spend time with him … so this last visit would mean more to Mitch than I think Luke realizes to this day.
What I then witnessed in the quite of Mitchell’s room was the most tender interaction between two young boys I have ever seen. It was a sacred exchange between two boys made of clay – each being shaped by experience, hardship, sacrifice, and love.
Lying on the bed was our young boy much too young to die. Standing next to him, another young boy holding his hand, bearing his young soul … much too young to say goodbye. It was not my place to ask God why such heavy things were required by hands of these two innocent souls. Instead, I began to ponder deeply and pray in my heart to understand what we were meant to learn from this hardship.
These aren't the only two children to experience this, and they won’t be the last. But they were our kids … and we loved them so. It hurt so very much to see.
This young boy, who had loved Mitch like a brother and faithfully served him with all his heart told Mitchell how much he meant to him, that because of Mitch he learned what it meant to be a true friend and that he would never forget him. Luke struggled to hold back the tears, his voice was broken with emotion, as Mitchell lay unable to move or speak. His eyes barely open, my little son listened to tender words of affection and friendship. My wife and I wept as we witnessed love and friendship in its purest form. I knew that Luke, Mitchell’s faithful little friend, was breaking inside.
Afterward, I hugged him and told him how much my wife and I loved and appreciated him. I told him I was sure if Mitchell were able to speak he would tell Luke that he loved him like a brother and that he appreciated how he was always there to help him when his muscles were too weak, and how much it meant to him that he always cheered him up when he was sad. I told Luke that he taught Mitchell and his parents what it meant to be “your brother’s keeper” and that we were so grateful to him.
Later that evening I couldn't help but think of that tender experience between these two young boys who were forced to grow up much too fast. I pondered the meaning of human suffering and the difficult experiences we are sometimes required to endure. I have learned to appreciate an old Jewish proverb, "Don't pray for lighter burdens, pray for a stronger back". It would seem that in all religious texts, no matter one’s religion, God makes no apology for pain and suffering. In fact, I have come to understand there is a sacred relationship between suffering and spirituality if we learn to listen and endure it well.
I admit the burden of losing my precious son has my knees trembling, hands shaking and my soul in tremendous pain. There exist no words in the human language to describe the depths of this sorrow. It is simply, utterly, bewilderingly heavy. But, like all suffering, the sting of that pain can make way to a deeper compassion toward others, a greater capacity to love, a stronger desire to reach toward God and understand His purposes.
The truth is, we are [all of us] no different than these two little boys. We are all made of clay. And with each choice we make, each reaction to events in our life, we carve out something beautiful or something hideous – something that loves or hates. We need only look at our own life experience to know this is true … we have all seen some let the clay in their hearts harden and become brittle or unmovable. Others allow the tears of suffering to keep their clay soft and pliable.
It has been an agonizing 1 year and 7 months since I have seen my precious son. My clay is still drenched with tears and soggy. One day the tears will eventually dry and I will do all that I can to remain pliable.
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.