Mitch lowered his head into his lap, tired of hospital visits and anxious to go home to his friends and family. My son looked to his future with youthful enthusiasm; yet, what he thought was a beautiful sunrise on the horizon of his life was in reality, a darkening sunset. As his parents, we knew time was running out … we saw the sunset but didn’t want to frighten our son. So, we just held him and loved him the best we knew how and kept that terrible reality from his tender mind as long as we could. Medicine was failing us. Medical bureaucracy and antiquated transplant policies failed us. We hoped and prayed something might slow the destruction of his heart from DMD – but such was not the case. Last minute interventions were too little, too late.
I suppose there are a million and one reasons I could be angry with people, medical systems and God for all that has happened. But I am not. I am only grateful. I am grateful for what I did have; for I had a chance to love my little child for 10 amazing years. He became my friend and I became his student. Though I was his father, he taught me more than I ever hoped to teach him.
On my son’s journey through life and death there were many times I cried out in my mind and heart, “Oh, Father, this hurts. Where are you?” After my son passed away, my world darkened by a veil of grief and sorrow – such that I wondered when the night might end. I wondered if it would ever end … for I had never known a darkness so pitch. A grief so heavy. Behind my smile was a broken, weary soul stumbling over pebbles.
Two years later I can say with confidence the darkness fades and strength returns. In fact, light and life return. That is not to say I am over grief - because I’m not. Some days are as dark with sorrow as any day I’ve ever known. Grief is a chronic condition that I’m learning to live with. Yet, I’ve learned to carry grief in ways that won’t injure other parts of me. For that I’m grateful.
The question I hear over and over from others on Mitchell’s Journey is “Why?” I’m not sure it’s entirely possible to know why we experience what we do. When hardships come some people get swallowed up in rage and self-destruct. Others blame God for their suffering – as though they should be the only human exception from pain and sorrow. And there are others who insist a loving God wouldn’t let us hurt – therefore He must not exist, or that He is cruel and unkind. There are so many ways to look at pain and suffering. So many ways to learn from it, or run from it.
I shared this in an earlier post: “Whether we settle the question ‘Is God the author of our suffering?’ or not, is immaterial. If our suffering is caused by other means … be it our own poor judgement or the bad choices of others, or perhaps our suffering is just a result of life in motion … the fact of the matter is God could stop our suffering if He wanted to. That He doesn’t sends the most important message of all.”
There is an ancient account of three God-fearing men who were to be thrown into a fiery furnace if they didn’t denounce their faith before an unscrupulous king. They boldly replied they would not. They also told the king (Nebuchadnezzar) that they believed God would protect them, but if not, they would remain true.
But if not … those are easy words to say in Sunday School, Shabbat, or from a pulpit or stage. It is only when we utter those words in our own wilderness of afflictions that the true lesson and test begins. What I’ve learned is we cannot escape hardship: but we can learn and grow from it or we can revile and shrink because of it. I will not shrink.
I believe life is hard because we are meant to become strong as well as good. Despite my heavenward pleas to spare my son, a little boy I loved with all of my heart, I now find myself on the other side of that phrase “but if not.” What I do next with my reality matters. I can shake my fist at the heavens in anger – but that won’t change heaven, it will only change me … for the worse. Or, I can take a knee and plead for understanding and wisdom. I can pray for a soft heart and discerning eyes … to see past mortality’s deceiving guise. For when I hear the terrible ring of death’s loud toll, I am reminded to worry less about the body and more about the soul.
With trembling hands and tears in her eyes, Natalie tore open an envelope that contained documents from the State of Utah. We knew exactly what it was before we opened the envelope – but that didn’t make this experience any easier. My sweet wife gasped for air as she poured over the contents of our son’s death certificate. I gave her space and cried, too. It occurred to me at this tender moment that when it comes to grief, the road is long.
While everyone in our lives (at the time) had moved on … the images of Mitchell’s funeral faded and become a distant memory … my tender wife and I were still dealing with the harsh realities of death. It took well over a year before all of the institutions stopped sending us material about account closures, insurance adjustments, school documents, social security cancellations, and more. At least, then, the mailbox stopped reminding us of our waking nightmare.
When it comes to the death of a child, the road of grief is made long in many ways. I’ve observed some kind and well-meaning people who post brave poems and other prose that suggest, because our souls are immortal, death is nothing at all. It is almost as if some wave a banner of liberty that says, “You see, you can stop hurting now.” But that doesn’t assuage sorrow. Some suggest that because they’ve felt peace that “you should, too.” Others might share the notion that our loved ones wouldn’t want us to be sad – that we should just be happy. (A guilt strategy that is as delirious as it is insensitive.) Others tell us our loved ones have merely gone to the next room and that we ought not to hurt so much because they are near. Though our loved ones may be near in a spiritual sense, from time-to-time, they may as well be on the other side of the universe – for there is no mortal door to walk through, no visiting hours, and no rest for weary hearts that wish for one more of anything.
There are a host of other things people do and share that would seem to ignore, deny or marginalize the emotional devastation of death. I do believe that most people only mean to help, unaware how their actions may complicate the sufferer's healing process. I am here to say that death, especially the death of a child, is most significant. It is a pain without equal. And, when others would suggest it’s time to move on or that death is a small thing in comparison to eternal things, they would seem to rob the sufferer the dignity of grief. Sometimes, without meaning to, they diminish the realities of loss and sorrow. The sufferer then tries to find ways to carry their sorrows in silence, often concealing their sorrows from view. There grief continues to live, buried like a cancer that sometimes becomes malignant. They hide their pain from view so they can reduce the criticisms of those who haven’t the slightest clue. Yet, the sufferer still hurts in unimaginable ways. They will hurt for a long, long time … long after the memory of funerals fade. Long after their surviving children have children. Grief remains.
Almost 10 years ago I visited with a dear friend whose father was about to pass away from old age. This father and great-great grandfather lost a child when he was a young parent. For 60+ years, he carried the weight of grief. Yes, he loved his children and grandchildren and lived a full life – but he carried grief, too. When he was on his own death bed I was invited to interview him so that his life stories might be preserved for generations to come. That interview was a tender exchange and there were feelings of love, gratitude and sorrow. This old man, whose tired body was about to find rest, was charming and kind, funny and humble. I marveled at this ancient soul made visible and sensed there wasn’t enough film on earth to capture his wisdom and life experience – however much I wanted to capture it.
Among the most poignant things he said was, “I can’t wait to see my wife again.” He then continued to say, with tears in his eyes, he was most excited to see his fallen child. For it had been so, so long. He cried and I cried with him. After all those years, he still felt grief. On the edge of death, he still sorrowed over his child’s passing almost a generation ago.
I walked out of that home a changed man. I sat in my car at the edge of his driveway and in the cover of night, I wept for him. That was my first glimpse that the road of grief is long.
That road of grief is long for a reason because, among other things, it teaches empathy. At least to me, empathy is one of the richest of all relationship currencies – both because it is so powerful and because it is so rare. It is an outgrowth of love and charity, of understanding and respect for others. It is to see and feel what others see and feel – a selfless act of caring with no thought of ourselves. One cannot feign empathy with hollow words, mechanical gestures or rehearsed behaviors. Empathy is a conversation between souls that is felt more than heard.
I do not write of grief today because I’m stuck in sorrow. To the contrary, I am experiencing more joy and sustained peace than I have ever felt since I lost my son. I suppose I share these entries like an early explorer might journal their findings through undiscovered country. I see beauty and horror, peace and sorrow; I see gardens of new life and wastelands with barren hills. I see beautiful, tall vistas that stretch into the heavens and valleys that reach deep in the shadows of death.
The road is long - but it is not all perilous. This much I know. One day I will be like that old man at whose bedside I sat. Like him, I will still have many tears for little Mitch. Anymore, I seem to identify with the lyrics of an old English folk song, “Though hard to you this journey may appear, grace shall be as your day.” Until that heavenly moment, with gratitude and joy, I will wend my way.
Last spring we were visited by 4 kind women who had been following Mitchell’s Journey for some time. The woman closest to Natalie lived near us when we were young newlyweds. They quickly became soul sisters … you know, the kind of friend you don’t see for years and pick up exactly where you left off. That is them. Interestingly, I have the same relationship with her good husband.
As it turned out, her neighbors and friends pictured in this image stumbled into Mitchell’s Journey at various points and they realized they all had that in common and took compassion for the loss of our little boy. Together, they purchased a gift for our family; a most beautifully framed painting that was symbolic of heavenly help while we suffer, even in our darkest hours. I will write of that piece of art soon because it has touched us deeply.
Attached to the back of the artwork was a heart-felt letter written to our family, which ironically was as much a gift as the beautiful art that now graces our home.
After much thought, we decided to hang the painting in our bedroom so it could serve as a reminder that, though we suffer, we are helped by others, even angels, we cannot see. I know this to be true. I know it because I have felt it: not once, not twice, but many, many times. Another reason we wanted this painting to hang near our bed was so that on nights when the pain of loss is especially tender, our pillows wet with tears; or when we awake in a panic (in the fog of sleep, forgetting our son has passed) and wanting desperately to save Mitchell’s life, only to fully awake and realize he is gone; we wanted the first thing we saw to be this painting. For those moments between sleep and consciousness are our darkest hours.
I don’t think these good-hearted women realize to this day what they did for us. Not only did they mourn with those that mourn, they offered a token of love that pointed to a higher source of help … a reminder that despite the darkness we sometimes feel, heaven is never far away.
As I was taking photos this day I began to think back on Natalie’s relationship with her friend, Kristin, and how interesting it was all of these good women came together. I wrote in my journal, and even posted this phrase: “I used to envision life’s journey as a single, straight path: I’m born, I live, then die – its simple math. But the older I get, the more I’m beginning to see, how intertwined our lives really can be. Life’s not a path to be tread by one, but a web so intricate and woven ... It is, I am certain, heavenly spun.”
It is seldom clear to what end things are meant to be. I just take them as they come and try to see things as Heaven sees. I don’t know much, but I have learned a thing or three - one of them being: when it comes to heaven … the more you look, the more you see. And when I look at this photo, I see 6 earthly angels .. six tender mercies. Then, in a moment of heavenly delight, grief subsides and I feel everything's going to be alright.
Over the Christmas break I took some time off … pretty much everything. I didn't post much here or anywhere. I still captured a lot of photos – but my mind and attention were on my family.
Natalie prepared a fabulous candlelight meal Christmas Eve. As we sat in our dining room I noticed a place set for Mitch, right next to me … where he always sat. Never a chair felt as empty as that chair did that night. I didn't say anything, but I noticed it. I think everyone quietly noticed it. Sometimes, in the rush of routines, we forget and set six places at the dinner table. This time it was deliberate. This time it was quiet act of love, a yearning of the heart, that somehow our little son might join us, sight unseen. And if not, it served as a memorial to a little boy we all loved and missed – and whose company we dearly wished.
As we ate our meal, everyone took turns telling each other what we loved about one another. It was a tender time and I loved to hear my kids talk so kindly about their siblings. Sometimes when our children fight or argue, I worry. But alas, my heart swelled when I heard Laura-Ashley sincerely compliment her younger brothers; I was proud of Ethan as we listened to him offer thoughtful observations and gestures of love toward his siblings; and I loved to hear Wyatt express his love for everyone in his young, unique way. Natalie and I both took turns, too, telling our kids what we admired and loved about them. Of all the gifts we shared that holiday, the gift of love was chief among them.
At the end we all took turns saying what we thought Mitch might have said about each one of us. We giggled a lot and cried a little. It was a beautiful night. I took a photo of the candle at the table and thought about Mitchie's last Christmas, two years prior. I then began to think about how fast, yet slow, time has already passed and how grief is no less punishing today as it was the day of his passing.
The truth about grief is it is a flame that cannot be extinguished. As long as I love, there will be fire. The difference is found in how I carry it. How I channel it.
Grief can either burn me or help me see. I choose to see.