I took this photo 7 years ago today. We had just left the cardiologist and learned that therapies were failing. Because Mitchell’s heart was in serious trouble, we petitioned for a heart transplant which would be denied a few weeks later. Thinking back on this uncertain and tender time feels like two things at once: like it was yesterday and also a lifetime away.
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The strange thing about healing is when I look back on our suffering, I see more beauty than pain. 🙏🏼 Its not that the storms of grief are gone, it’s more like I can feel the sun despite the rain.
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#mitchellsjourney
Tomorrow I'll have an opportunity to speak at the annual Utah Program for Inherited Neuromuscular Disorders (UPIN) conference.
I've been asked to speak on grief & hope - a topic that is near and dear to my heart.
Over the years, I've become something of a grief anthropologist, I suppose, trying to understand the meaning of my own journey. I hope to share things tomorrow that will be useful to those who face an uncertain and difficult future.
The key topics we'll cover are:
- The Deeper Meaning of Hope
- When Hard Things Happen (short overview of Mitchell's story)
- Confronting the Big Question
- A Key to Happiness
- The Healing Power of Gratitude
Evening was drawing near when Mitch asked if our family could go on a ride around the neighborhood. His muscles were getting weaker by the day, and walking distances of any length were more than he could bear. As the world was getting bigger for healthy kids, Mitchell’s world was getting smaller. His options, more limited. But Mitch smiled anyway and was glad to be alive.
Whenever possible, Mitch wanted to go outside to feel the wind on his face and experience any part of life. Sometimes I wonder if my grief is magnified because I know how much my son appreciated being alive – and my heart is pained that his life was taken away. But those are the thoughts of a mere mortal, and I know that there is more to life and death than we imagine. Even still, death hurts me so.
So, on this peaceful evening, Ethan took point on his bicycle, ensuring the path was clear for his brother while Mitch tugged his sister on skates. Mitch enjoyed giving others rides because it allowed him to do something nobody else could. What made him different also made him special.
Like Mitch, I loved the atmosphere of sunsets and always paused to appreciate the beauty of natural light. Just as I was admiring the sky, Mitch looked up at me and said, “Dad, isn’t it beautiful tonight?” I smiled and said, “Yes, Mitch, it is beautiful. Just like you.” I leaned down and kissed his head only to catch the faint scent of shampoo; a hint bedtime was near. I thought to myself, “How I love having children.”
When I think back on my most treasured memories as a father, they’re found in the most ordinary moments – those times and occasions that seem to hide in plain sight. They’re the things I am tempted to overlook and take for granted. I don’t know that I’ve ever confused shallow things for significance – but I have sometimes missed the simple things, not recognizing how significant they truly were.
I have written in the past that grief is my teacher – but what does that mean, exactly? One example, at least for me, is grief has taught me the very things I long to do with those who are gone are the things I should seek after with those who are now living.
I don’t grieve that I can’t take Mitch to Disneyland. I grieve that I can’t sit on the couch and read books to him. I don’t long to go on vacation with my son, I long to tuck him in and listen to him talk about his day and share his hopes and dreams. I don’t miss taking him to a fancy restaurant; I just want little Mitch to sit by me at the dinner table again and hold my hand like he used to. If it’s the ordinary stuff I long for, then it is the ordinary stuff I should seek after and cultivate.
Looking back, I can see how easily one can get swept up in grief and sorrow – so much so, it becomes a paralytic. Yet, my grief doesn’t paralyze me; it mobilizes me. You see, the irony of death is it has taught me how to live. My pain, for example, has led me to my life purpose. I don’t know that I would have found it otherwise. I suppose I can thank my Father for that. It seems to me that pain in life is inevitable, finding purpose is a choice.
If my son’s journey has taught me anything, it’s taught me slow down and find significance in simple things. And when I do that, gratitude and joy inevitably follow.
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REPOST from 2017
The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son.
“The trouble with time is we always seem to think we’ll have enough of it. I don’t know why we’re built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.”
The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.
Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band-aids, scraped knees, and children’s books. But that was not our lot in life.
I’ll never forget our first encounter with our hospice nurse. She was kind, compassionate, strong, and direct. In a way, most unexpected, she was soothing to Natalie and me … parents who felt very much like children, fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition of death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed as I have never prayed before. “Take me!” I plead with my Father, “Please, take me instead. I would endure any suffering if it spared my son.”
After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to grow truly.
Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow.
So, there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears, wondering how I could have been a better husband and father. I made plenty of mistakes, and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes, and I always made things right with my kids. Instead, I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.
The trouble with time is we always seem to think we’ll have enough of it. I don't know why we're built that way ... that mostly in times of trouble when we stand to lose everything, do we re-discover everything that really matters.