Mitch sat patiently at the examination table for one of his regular check-up’s at Schriner’s Hospital. Dr. Kerr, his Neurologist and DMD specialist, would soon arrive to monitor the progress of his muscle wasting. Mitch didn't seem to mind the wait; he was a good, good boy. Dr. Kerr was one of the great doctors. You see, good doctors treat the body, great doctors treat the person. Dr. Kerr was (and remains) one of the great ones because she always gave a thoughtful dose of personal care. And what a medicine that is. To know that someone cares wields great healing power; it can steady a troubled heart and even help put it back together again. Like epinephrine can boost human performance, genuine care can give an emotional boost that rallies strength to fight on. Care is a most powerful thing. Perhaps, among other reasons, it’s powerful because, anymore, it’s so rare.
Having worked with little boys with DMD, Dr. Kerr knew just how broken our son was. Beneath the surface of his soft smile and tender countenance, Mitchell’s was body breaking down on a cellular level. Whatever muscle strength he knew that day would soon fade away like a cloud on a summer’s day, never to return again. Though he looked healthy, my little son was fatally broken. The irony with my son’s journey was our little boy with the tenderest of hearts would die from heart failure.
As I captured this photo my heart went out to Mitch. I knew a little about the broken road before his feet because I had read some brutally honest books about DMD, what to expect and the catastrophic nature of progressive muscle wasting. Pained by his future, I searched the world over for a detour, a pit stop, or an alternate route. But there are none. There is only one road for these children and that road leads to certain death.
As a father, I have always tried to pave the way for my children’s future. Despite my efforts, which are often clumsy and weak, I have discovered my wife is a superior parent to me and she often charts the better way with my children. I am grateful to learn from her daily. I take mental notes and try to follow her example. She instinctively knows that the better path is often the inconvenient one. I love and honor her for that.
Yet, no matter how diligently we try to chart the course, sometimes the road ahead is broken. Less often, the road ends abruptly and we see, to our horror, our loved ones tumble into the abyss.
Until the end, Mitch seemed almost normal. He was still walking, though his gait was becoming more pronounced and walking distances shorter. He could still use his arms, though he couldn't pour himself a glass of milk, for even a half gallon had become too heavy. Each day for Mitch was a stretch of road. Some days it was clear and paved, other days were met with tremendous obstacles.
The broken road for our little boy was invisible to most. He just faced day, each broken road, with a smile … grateful for life.
If ever I was tempted to complain about the difficult road before us, Mitch constantly reminded me of the saying, “There once was a man who cried because he had no shoes, until he met the man who had no feet.” Mitch was just glad to have a body. I was often brought to tears whenever he said, long before his heart was in trouble, how grateful he was for life. If his life had a mantra, that was it. Though grief, at times, has me wish for death, Mitch taught me to be grateful for life. And while I may be tempted to be like the man who cried because he has no shoes, I love someone deeply who has no feet.
However broken the road may seem, I am grateful to still be traveling, for there are heavenly sights yet to be seen. One day, on the very edge of that place beyond the hills, on the horizon of that place I cannot see ... I will see a form familiar to me. I will run to him with bare and bleeding feet … to that lovely form so familiar, my son I shall meet
When Mitch called out to me at the hospital and asked if I would cuddle with him my heart melted. As father and son, we cuddled all the time, but this time was different because I knew his heart was failing and I didn’t know if it would be our last. My sweet wife took a photo of us with her iPhone as I handed Mitch a teddy bear she gave him. My little boy smiled as I kissed his forehead and softly hugged him. I wouldn't have traded that moment with Mitch for all the money in the world.
At this moment Mitch wasn't aware his life was at its end. That was a burden we would quietly carry for a few more weeks so Mitch could live as normal a life as possible. To our dismay, we couldn't protect him from the inevitable, but we could protect him from worry and fear – and in this instance, my wife and I felt that was best for Mitch. We eventually told him, but we wanted him to be happy for just a little while longer. That was our gift to him.
In the coming weeks we began to witness the miracle of the afterlife – that our son was being spiritually prepared for his own transition. I will write of those experiences another time – but there is no doubt there is more to mortality than we can see with our mortal eyes. So much more.
Even still, I find myself wrestling with grief in the most unexpected ways. Just this morning I awoke at 4:30 in a sheer panic, wanting to save my son. When I realized he was gone and I couldn't save him, I wept. I used to wake up every morning in a heart-pounding panic … thankfully those mornings are less frequent. But they still happen, and when they do, they are soul crushing. I dislike those mornings because I have to relive the shock and horror of my son’s death as if it just happened.
Just a few days ago Herriman City experienced some flooding and I was told it affected part of the cemetery. That evening, as I left work, I drove to the cemetery as quickly as I could, worried about how the flood affected Mitch. I couldn't get there fast enough and wanted to help my boy. I knew he wasn't there – but in my heart I wanted him to be. I was grateful his spot wasn't affected, but my heart went out to others who were. Even in death, I yearn to protect my son and am pained that I cannot.
Although I want so badly to protect my son, sometimes, when my soul is quiet and I’m listening with my heart, I realize the opposite is true … that now Mitch is protecting me.
One day, in what feels an eternity from now, I will see my little boy again. And I will weep. I will also realize that he is no longer a child – that, in fact, the opposite is true: the soul of my little boy is much older than I ever knew.
When night came my wife and I would try to get a little rest in a small corner of the CICU room. On a bench barely made for one, we somehow managed to share it and lay our weary heads together hoping to find energy to fight another day.
This was what I saw each night from my pillow. The florescent lights from outside shone through the glass doors and paper-thin curtains like the punishing noon sun – as if to taunt my fatigue. On top of that, alarms were constantly sounding alerting nurses of the disaster that was unfolding in my son’s body.
Unable to find rest, I would often sit in a chair beside Mitch and hold his tender hand while he slept. Quietly I wept. As I've noted in earlier posts, his heart was pounding so violently it seemed as though a grown man were in his chest trying to punch his way out. I thought to myself, “How could this be? Here is a little boy who has a mind to hurt no one – but is being mortally wounded by an invisible enemy. How could this be?” There are answers – but often, in our sorrows, they are not as forthcoming.
It was hard to find rest at the hospital because everything reminded me of the violent battle that was taking place under the surface of my son’s skin. While doctors were doing all they could to keep death at bay just a little longer, everything reminded me Mitch wasn't on borrowed time, but at the end of time. Each night I would sit by my tender son and weep a little more than the night before. Each night I found myself more weary and very much in need of rest.
Finally, after having exhausted every medical avenue we knew at the time, we were home. No longer smothered by the constant reminders my son was dying … no more alarms, no more displays showing his schizophrenic heart rate … we were home and focusing on the other heart, the one that loved. At least at this moment I understood how ignorance could indeed be bliss. We did exactly as the cardiologist suggested as he choked back his own tears, “Take him home and love him with everything you've got.”
While travelling through the wilderness of grief I have discovered sleep a strange bedfellow. On days the gravity of grief is particularly heavy, sleep is a welcomed break from the sorrows of the world. Sometimes night can’t come fast enough – for I know I will find rest.
Yet there is a place that terrifies me … it is the transition on either side of sleep. Most nights [or mornings] I consider myself lucky if I slip from one state to the other quickly. But if I spend any time at all in that place of transition, somewhere between sleep and consciousness, I experience the horror of losing my son as though it just happened. Those moments are terrifying beyond description. They break my already broken heart, all over again. I wish these moments didn't happen. But they do. And I cry out to my Father, that my weary soul might find rest. I don’t know if those streaks of panic and horror will ever stop. I pray they do.
But if not, I will bear that burden with a glad heart. For I know in my sorrows I am learning; and though my hands tremble and soul shakes, I will take these lessons patiently.
One day I will see my deepest sorrows transformed into the sweetest glee.
This morning Natalie and I were invited to speak to 4th year medical students who are about to enter their residencies. We were asked to share our son's story and put a face to patients. We shared our perspective as parents who were thrust into a medical system that was as bewildering as it was alien.
It was hard. I had to fight my emotions; I just wanted to go in the corner, turn off the lights and cry. But cave dwelling is not an option and telling our son's story is something that must be done.
On the other side of medicine are people with families; there are mothers and fathers, brothers and sisters and many more who cling to their loved ones. We pointed to the amazing doctors who helped our son and family - people who understood the practice of medicine and the practice of compassion.
Being human, and standing on the other side of the practice of medicine, I am persuaded we must learn how to treat the body as well as care for the soul.
Because when medicine fails us, all we have left is love. And at the end of the day, I suppose that is why we practice medicine in the first place ... so we can save the ones we love.
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Note: I recorded our presentations and will post videos of them soon.