Mitch lay patiently on the cold hospital bed as the medical technician began to record his heart function. I saw my son’s countenance drift to some far-off place and it seemed as though he were contemplating heavy thoughts; the kind of thoughts elderly people think at the twilight of their lives. Here was a young boy who should have had a lifetime ahead of him; instead, an invisible monster in his body was devouring his heart. At this point we knew his heart was failing, but not even the doctors knew how quickly things would unravel.
It wasn’t until this moment I realized Mitch sensed something was happening – and that something was not good. From the day of his birth I had a strong impression he would have a short life. But now Mitch was beginning to sense the same thing. He didn’t like going to the hospital for tests, but he bore that burden patiently. He didn’t like that his muscles were getting weaker and that he couldn’t play like healthy kids, but he carried that burden with a grateful heart for the things he could do. My little son has shown me how to bear my burdens patiently. I am not as good at it as he was, but I’m working at it.
I often wondered if those working in the hospital ever thought about what happened on the other side of their hospital doors. We go in sick, and if we’re lucky, we leave recovering … and alive. These professionals see a constant stream of broken bodies and I am sure that is numbing – but I wonder how often they pause for a moment and see broken souls. It doesn’t take much to bandage that, too.
With few exceptions, almost all of our doctors were both professional and human. They were cardiologists, but they were also fathers. They were nurses, and they were mothers too. I always appreciated the medical professionals who attacked a medical problem with clarity and vigor but remembered there was a frightened child and trembling parents who just wanted one more day. As patients and parents, we don’t need our doctors to be pseudo-psychologists, we just needed to know they care – even if only for a moment.
We left the hospital this day a little shaken up; afraid of the future and unsure of what was to come.
As we were walking out of the hospital Mitch said in his soft voice, “Dad?”
I turned to him, “Yes, son?”
“Can I go to work with you? I just want to spend time with you.”
My heart fell to the floor, “Of course, Mitch. I love to spending time with you, too. You can sit at my desk and play Minecraft, help me file some papers and organize my drawers. Then we can go to the Olive Garden for lunch.”
Mitch smiled and I smiled back, then I turned my head and wiped the welling tears from my eyes.
And that is just what happened. Mitch went to my office the next day and we spent time as father and son. Time I will never forget. Time that, in retrospect, was more valuable than all the treasures of earth.
In a few hours Natalie and I will speak at the University of Utah School of Medicine and share Mitchell’s Journey. There we’ll offer a candid look at what happens in the lives of those who fight for life and eventually lose. We hope to lift the curtain a little on what happens on the other side of the practice of medicine – so that when they are tempted to rush patients through a system designed to fix bodies, they might pause a moment and remember. Remember little boys and girls, like Mitch, who are frightened and in need of hope and a kind smile. For compassion is a kind of medicine, too.
I will never forget when Mitch sat at the bottom of our steps, struggling to catch his breath after playing one of his last Nerf gun battles. He said to me, “Dad, why can’t I be like a regular kid? I know I will not get better. I know I will die.” In that very moment, keeping my composure consumed what little strength I had left. I was a broken father, stumbling over pebbles and powerless to rescue my son. Still, I hid away a river of tears so that I might comfort my little boy and not frighten him. Though the prospect of losing Mitch frightened me deeply. “Mitch, my son, I don’t know why we have to do hard things. I only know that our Father loves us and that we are on this earth to learn and grow.”
I don’t know how much those words comforted my son in that moment of childhood grief – but I do know he thought deeply about life and death and what happens on the other side. As his father, I did my best to teach him – not to believe my words, but rather I tried to give him the tools so that he might learn for himself … so that he didn’t need to simply believe on my words, but that he might have a knowledge of things for himself. After all, that is the greatest gift we can give our kids … “Don’t believe me. Let me show you how to find out for yourself.” As he neared the end, Mitch came to know (in sacred and undeniable ways) there was more to life than what we saw with our mortal eyes.
So many of the experiences my tender wife and I had leading up to (and during) our son’s death are the kind of life traumas that you never get over. They are not the stuff of nightmares … they are the stuff beyond nightmares. I have discovered that you don't set it aside and move on. That is impossible. Instead, we have to learn to live with those memories and decide what meaning they have for us.
Though I often write of hard things in this place, I don’t live in a constant state of grief. I have grief moments, but thankfully they don’t last as long as they used to. In a manner of speaking, I no longer see a light at the end of the tunnel – for I believe I have passed through the tunnel. That doesn’t mean all is well and that things are as they used to be. I am forever changed over the loss of Mitch. I will miss him the remainder of my mortal days and I have learned to live with chronic grief.
At least for me, Mitchell's Journey is like cleaning a deep wound. It's not for everybody. What's more, because my wound is deep, I tend to go deep and it hurts a lot. But that deep cleanse is necessary so as to not allow sorrow to infect my soul.
As I continue down this path of reflection over my son’s journey, I don’t write to wallow. I write to examine. To think deeply. To discover the meaning of suffering and other things. I write because I don’t ever want to be that person who forgets the lesson. I think that’s a universal human struggle: to remember and to see clearly. For when pain passes, we tend to forget and go to what’s easy. Mitchell’s Journey, at least for me, is a place to remember and a place to see.
I write so that I might remember what I’ve learned at such a terrible price. I write lest I forget and become what I used to be. For where I was yesteryear is no place for me.
The year after Mitch passed away my aunt and mother came to visit our home. We love having visitors – and enjoying their company that day was a treat. In many ways, my aunt is like a second mother to me and I love her dearly. She is currently in the final stage of her battle with cancer. I pray for her every single night and count myself blessed to be part of her family.
When I was much younger I remember my aunt visiting our home. At one point we started playing some word game around the kitchen table; a moment that I treasure to this day. It wasn’t long ago she shared her memory of that night some 27 years ago … when I conjured up a funny definition to a word. While playing the game, she presented an obscure word for which I then had to come up with a definition. I didn’t know what the word meant so I said “the irresistible urge to saddle a horse.” My family comes from strong cowboy stock, so she laughed and laughed at my silly definition. When she reminded me of that moment we both laughed again, all these years later.
It’s the little things. It’s always the little things.
So on this beautiful spring afternoon their visit may have seemed little to them, but it was big to me. I was at an especially tender time in my life – learning to live without my son – and their company and smiles seemed to lighten the weight of grief. How I needed that relief.
My heart was full that day – because I was able to reflect on some good moments from a time long gone. I also gained a deeper appreciation for all that I had in the moment.
As my mother and aunt began to walk down my driveway, I took a photo of these two beautiful souls, sisters joined in arms. As they carefully made their descent my mind flooded with memories of Mitch on this same slope. In my mind, I could almost see visions of Mitch laughing as he drove his scooter down at reckless speeds … or the snow blowing across the way as he slid down the snow-packed concrete.
One place, so many memories … and here, for good measure, was yet another memory to keep and treasure.
Raising little Mitch taught me that if I look for beauty, I will find it. Well, I found something beautiful that day and my heart was overflowing with love and gratitude for these two good souls who helped shape me in their own special ways.
Today I will look for beauty. When I find beauty my grief turns into gratitude … and that is a good thing.
“The trouble with time is we always seem to think we’ll have enough of it.”
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 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 so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were 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 to 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 like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare 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 truly grow.
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. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much.