WHEN MEDICINE CAN’T SAVE US

... there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other.
— Christopher M. Jones Mitchell's Journey

Mitchell’s neurologist, the same doctor who diagnosed him at the age of 3, came to the Cardiac Intensive Care Unit to say hello to our son. Except, she wasn’t really coming to say hello; she came to say goodbye – for she learned Mitch had end-stage heart failure and cardiologists thought he had days to live. 

This good doctor had a reverence about her as she set aside her degrees in medicine and practiced humanity. My heart swelled as I heard her speak softly to our little boy. She was kind and compassionate, even when she didn’t need to be. We were not even at her hospital, yet she went out of her way to be human. By stark contrast, a different doctor who denied our son a heart transplant was visiting other patients right next to us. Our son was dying and she never said a word to us; she walked by us as though we were ghosts. Imagine the deep psychological panic we felt when we saw other patients receiving life-saving treatments right next to us, while our child was denied help and hope. I wept so hard that night I nearly passed out from exhaustion. 

I’m not angry at that doctor for being so impersonal, nor am I angry with God that my son was called home. I am sad. Sad beyond all description. But I am not angry, for anger is a toxin that destroys us from within. 

Little Mitch looked softly into his doctor's eyes as she leaned in and said tender things to him. Dr. Kerr didn’t know, at the time, what her visit meant to my son. This was not a billable visit. Insurance wasn’t going to reimburse her travel. Instead, she came on her own accord because she remembered why she practiced medicine in the first place. She was then, and remains today, the personification of The Child First and Always.

Later that night, Mitch told me how much he loved his doctor and how special her visit made him feel. I can only hope that during those moments when my son was slipping away, he remembered the good people in his life and the love he received. I hope that brought him comfort. I hope it brought him peace.

It occurred to me during this tender exchange between Mitch and his doctor that there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other. We are all mortal and death is our inheritance. 

Though we cannot stop death, we can help each other along the way. When someone’s time has come, we can, like this good doctor, love them and offer comfort. When medicine can’t save us, we can offer love and compassion, and that is medicine for the soul. 

MAKING PEACE WITH PAIN

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.
— Christopher M. Jones | Mitchell's Journey

I don’t have many photos of Mitch with me – which makes the precious few I have all the more special. Most of them aren’t in focus – but I don’t care. I’ll take anything I can get. 

Whenever he was close to me, Mitch would lean his head into my arm, shoulder or chest as if to cuddle any way he could. I know he felt comfort around me – but I don’t think my son had any idea the comfort I found in him. I still long for that comfort.

By the time this photo was taken, we were informed Mitch had days to live. I was so sad about losing my son that I cried everywhere but in front of him. My eyes always seemed to sting, as if I were swimming in chlorine. Every waking moment, my chest felt like it was covered in a lead blanket, my lungs felt shallow and breathing seemed vaguely sharp and painful – for the hours-upon-hours of weeping took its toll on my weary body. Sleeping was impossible. And when I finally found sleep, I wasn't sleeping; I was just passing out. 

I remember teaching little Mitch how to walk as a toddler. It was hard for him because his legs were already weak – but he would hold my fingers with his baby hands and he gave it all he had. I remember listening to his tender voice as he read children’s books to his sweet mother. He tried so hard to be a good student. With vivid detail, I remember watching his chubby little hands grip crayons and work so carefully to color within the lines. As he grew a little older, we tried to teach him that one’s beliefs don’t make them a good person, but their behavior does. Mitch embraced that philosophy. Before he died, we asked him what advice he would give the world. He said this exact phrase, “Be nice to each other and be glad you’re alive. Nothing else matters.” In a tender moment, this small child became a giant; the student became the teacher. I will spend the rest of my life trying to live up to those tender words from a little boy who did just that.

We spent almost 11 years trying to teach our son how to live. Suddenly, we had to teach our son how to die. Nobody ever taught us how to do that and we were terrified beyond measure. As this little boy came to know his fate, the real giant emerged. Though small in stature, he was towering in spirit. 

I have seen a lot of material over the last few years about grief, death, and healing. Some say death is nothing at all – as if to suggest we needn’t trouble ourselves with sorrow over the death of a loved one. Others say our child is just around the corner, as though we might suddenly find peace in such a notion. 

The loss of a child isn’t nothing. To the contrary, it is everything. What’s more, around what corner can I walk? What room can I enter to see my child and hold his hand once more? There is no such room, no such visiting hours. Though I have had spiritual experiences that show me my son still lives and that there is life after life, I still miss my son. I miss the way I used to have him. I miss his voice and his tender ways. I miss the ordinary days. 

Though I understand what those writers were trying to say, I believe some of that prose can cause the sufferer, especially those new to grief and even those who have suffered long with grief, to wonder if something is wrong with them; that because they still hurt, perhaps they’re not grieving right. 

Death is no small thing. It is the biggest thing. We spend our lives avoiding it; we invest in medicine to stop it, and we make laws to preserve it. Death, it is the loss of everything. Grief, the terrible sting over the very thing our hearts most want to cling.

Grief is a long, long road. As far as I can tell, I will live with grief the remainder of my days. Through that sorrow, I am learning Heaven’s strange and mysterious ways. And with each tender lesson from my Father, I am beginning to make peace with my pain. I accept that somewhere deep inside me, there will always be a little rain. That is making peace with pain.

AT THE HEART OF THINGS IS EVERYTHING

Mitchell’s cardiologist placed a stethoscope gently on his chest. Suddenly he closed his eyes and disappeared into a state of deep meditation as he listened closely to the fumbling, tumbling sounds of our little boy’s failing heart. There wasn’t much time left and this doctor knew it. Unaware of his fate, little Mitch just wanted to go home. At the end of the day, I believe that’s where our heart yearns to go. Home. Back to that time and place where we felt safe and surrounded by the ones we love. 

Just a few days prior this same cardiologist, fighting back his tears, told us our son only had days to live. This good man spoke to us as a medical professional first and as a father second. The doctor in him told us the medical truth bravely and unfiltered – which we wanted and desperately needed. The father in him told us what he would do if he were in our situation. As far as I’m concerned, he practiced perfect medicine – for he was professional and human.

I cannot get this image out of my mind. I have many such photos of this doctor performing this same act of listening to my son’s heart – each time with the same degree of intensity. 

In this image is a metaphor that I can’t put away. Little Mitch once said to me while dealing with a hard thing someone had done to him, “Dad, if you see with your heart, you see everything that matters.” Mitch instinctively knew that old adage “hurt people, hurt people.” Someone was mean to him, yet he didn’t see a mean person, he just saw a good person who was broken and hurting on the inside. Listening to the heart and soul sometimes takes just as much focus and intent as this good doctor applied to my son’s physical heart.

I don’t know that I’ve ever shared this, but my son was named after a dear friend of mine who unexpectedly passed away several years ago. One night, over 20 years ago, my friend and I were in the heart of Kentucky. I remember that night like it was yesterday … the sky was clear, the stars were bright and there were fireflies nearby. We were talking about things that changed us from the inside out. We were only 19 and 20 at the time, but we had already experienced a change of heart that was significant and we were sharing our experiences. He shared with me something that changed everything for him. In high school he was rebellious and did everything his parents told him not to. One night, well after midnight, he smashed through the front door drunk, high, and belligerent. He then passed out and fell down the stairs and on to the basement floor. The next thing he remembered was his father holding him at the foot of the steps, weeping and telling his son how much he loved him. It was his father’s act of love and compassion that changed my friend for good. When Mitch told me this story, we both wept and discovered a spiritual truth. 

Over the years, time and circumstance created distance between us. We attended different universities and our lives did as they must … go on. But I never forgot my friend. So, on that fateful day my wife and I had our 3rd child, we named him Mitch because of what this good man taught me about love and compassion. I finally reconnected with my friend a few years before he passed and told him how we named our son after him. He was humble and kind and I was reminded of the kind of person I hope to be.

I wonder how the world might change if everyone started to see and listen with their hearts. That’s not to say we become illogical and foolish, driven to-and-fro solely by emotions; but how might things change in our own lives if we truly listened to the intent of others? I can say with confidence that almost every single conflict I have been a part of stemmed from a misunderstanding of the heart. Most people aren’t bad, they’re just a little broken and don’t know what to do with their jagged pieces. 

It is my experience that people change because they are loved, not because they are shamed. I hope to follow my son’s example and see (and listen) with my heart – for when I do, I see everything that matters. 

That’s what Mitch taught me … at the heart of things is everything. 

LITTLE MERCIES

Baby Marlie waddled up to Mitch and begin to kiss his face. The chief cardiologist allowed her to be smuggled past security so she could perform some puppy therapy. It worked every time.

This little boy and puppy had only met about two weeks prior and were already the best of friends. To look at video footage of these two reveals something that was hiding in plain sight; though she was a baby pup herself, she seemed to recognize something was different with Mitch. She treated him with a tenderness and care that was unique and startlingly obvious. Almost maternal. The circumstances of adopting this puppy were heaven-sent, and I’ll write of that another day. But one thing was clear: this little dog was on a mission of mercy … and not a day passes that I don’t thank my Father for it.

Until that sacred evening of my son’s passing, this little dog played an important role in comforting my son. This little puppy was a tender mercy to our boy. Today, Marlie serves my dear wife, who has a broken heart of a different kind. When Natalie is especially sad, Marlie seems to notice, just like she did with Mitch, and makes a visible effort to comfort her. Often, I can’t help but cry tears of gratitude when I see the little mercies in my life and in the lives of those I love.

Tonight, as I lay my head to sleep, I will greet the night unafraid ... my heart overflowing with gratitude. Gratitude for the little mercies and the big ones, too. For we have a Father who cares about the little things - evidence He loves me and you.

BROKEN ROADS

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

THE OPPOSITE IS TRUE

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.

IN NEED OF REST

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.