True to the Make-A-Wish tradition, Mitch had just thrown his coin into the wishing pond. I don’t know what he wished, but whatever it was, I hope he got it.
Everything seemed surreal back then. Mitch appeared so normal at the time and the effects of DMD were all but invisible to the untrained eye. We almost felt guilty going on a Make-a-Wish trip because he wasn’t profoundly sick … yet. But we saw the storm clouds on the horizon, we knew what was coming and decided to make the most of what strength he had. The decision to go when we did was a blessing in disguise.
After little Mitch threw his coin in the water I sat on the edge of the pond then grabbed my son and gave him a big hug and kiss. Wyatt wanted in on the love and I hugged and kissed him, too. Not a day passes that I don’t show and tell my kids how much I love them. Not a single day.
Mitch was a little overwhelmed by all that was happening. As far as he was concerned, he was pretty-much normal and he wondered why everyone was making such a fuss about him. But Mitch didn’t know what the doctors knew – that the path that lay at my son’s feet would soon become treacherous and one day his path would end.
When I was younger and envisioned my future, my heart wasn’t set on having a big home or fancy cars; I just wanted children to call my own. I wanted to be a father. I have had many professional titles in my life and none of them mean as much to me as father. I would sooner hear the word “Dad” from my children’s voices than any title or accolade the world could offer. I would give up everything I have if that meant I could be a father to Mitch for one more day.
There is a saying that goes: “the real measure of your wealth is how much you’d be worth if you lost all your money.” When I look at my wife and children I feel like I’m the wealthiest man on earth. And if love is a measure of real wealth, than I am rich indeed – and I will spend the rest of my life sharing my love in word and deed.
Last summer Ethan got a little motorcycle to tool around on. He loved the sport and his thoughtful mother arranged to surprise Ethan for his birthday. We did a great job selling Ethan that he’d never get one because it was too dangerous, etc. He had given up asking for one – which made the surprise all the sweeter. With the help of some amazing neighbors who helped source and assemble the motorcycle (thank you Seth Lloyd), Ethan had the surprise of his life.
Little Wyatt, who is now fast approaching the age of Mitch when he passed away, was so excited for his brother. Though he was anxious to enjoy a gift he never thought he’d get, Ethan looked at Wyatt’s big eyes and said, “Do you want a ride?” Wyatt smiled with delight as his older brother handed him his helmet. Carefully they drove down our cul-de-sac and as Wyatt carried with him an enormous grin. These are the kind of days parents live for. To see your child find joy is one thing, but to see your child give joy to another is altogether different. That is a satisfaction of a deeper sort. If I find deep joy in watching my own children love and lift another, how might our Father feel about us doing the same to each other?
Ethan has told me on several occasions that he wants to use the lessons he’s learned from his fallen brother to help others. At 14 years of age, he reads Mitchell’s Journey all the time and comes back to me with ideas, insights and self-discoveries. Sometimes I cry when I reflect on the things he says – for tender mercies abound.
Ethan has learned to put his arm around Wyatt like he did Mitch. Every day he is shaping his little brother through kindness and brotherly mentorship. Oh, they’re not perfect. They’re just like any young brothers who tease and fight – they take things too far and their arguments sometimes seem to go on too long. They both have their strengths and growth opportunities, like all of us do. But the point isn’t that they stumble, but rather how they get back up again. Their forgiveness isn’t conditional. I love that.
To young Wyatt, on this warm summer afternoon, his older brother was a super brother-turned superhero. He inspired me just as much as his little brother.
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.