About to speak to another medical community. My address is entitled: What Happens on the Other Side of Medicine.
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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.
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This afternoon Natalie and I went to Primary Children’s Medical Center to visit another young boy who also has DMD and is struggling with heart failure. I didn't take photos of this family out of respect to their privacy, though I was strongly tempted to document their story. What happened to our sweet Mitch is happening to many, many other young children – and we want only to help them the best we can.
As Natalie and I stood outside the CICU waiting for security to let us in, my tender wife clutched the small gift she brought this boy, closed her eyes and gathered herself – for we were about to enter a place very near to our broken hearts. Just past this door and around the bend was Mitchell’s room where a medical team fought to save our son. Behind this red door was the very place we learned our son had days to live and our lives and hearts would become forever broken.
As the doors opened it felt as if we walked back in time. Part of me anxiously peered into Mitchell’s CICU room in hopes of seeing him – instead, I saw a tender infant in the very room that was home to our little boy. As we greeted the family we were there to see, we spoke with this young man a while. He was listless and tired and struggling. Our hearts went out to this young boy who, like Mitch, only wants to live. Our hearts also went out to his parents who love their son so very much. As we said our goodbyes in the hall our hearts were heavy with sorrow and overflowing with love for them.
As we left the hospital I couldn't help but retrace in my mind our journey home with Mitch – when he left the hospital to die. That was his last trip home and the longest commute of our life.
We don’t shake our fists at God for taking our son … His son, home. Instead, we kneel and thank God we had little Mitch in the first place and that because of him our hearts are filled with more love than ever before.
I believe sorrow can be a teacher, turned gift, if we allow it. There is a divine purpose to suffering and struggle if we listen with our hearts. Yet listening with our hearts can be difficult, especially when they’re trembling in sorrow. But, once we quiet our minds and listen with our soul, we will see our sorrows aren't meant to hurt us – but instead our hearts shape and mold. Though we lost our son and weep in grief, we have learned a deeper kind of empathy than we know how to speak.
I don’t know the future of Mitchell’s Journey, or the journey of our family in the years to come. I only know we want to lift and love others – that is what our sorrows taught us.
In ways we never knew possible … we care
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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.
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