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“This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.”

— Christopher M. Jones | Mitchell's Journey

Natalie and I left Mitchell’s room as he drifted to sleep. Mitchell was slipping away. Everything was escalating and we knew time was running out. We both sat in the hall just outside his room and wept. Our tears came from a well of the deepest sorrows. I eventually looked to my weary wife … exhausted, frightened and heavy with grief. My heart broke even more because I knew this woman, who has the tenderest of hearts, loved her little boy in ways only a mother can know. The “fix it” father in me desperately wanted to make it all go away, but I could not. 

There were many occasions that I prayed to God “Please, no.” I petitioned over and over that somehow … some way … my son would be spared. Yet, every medical intervention was riddled with peril. Too much was happening, too late. Every path was a dark path. Even still our prayers continued, “Please, no.”

At some point during my wrestle of the soul I received a distinct impression. After I had cried out what felt a million-and-one times “please no” I was finally answered with “please know”. What followed was a most unique spiritual experience. A peace and understanding had fallen upon my wife and me; and while we didn't have words to describe what we were feeling, we had a strong sense that we were being told “Please know, everything is as it’s meant to be. I've got this.”

Over the years I have come to understand that mortality, our life on earth, is a schooling the soul. It is an education that takes a lifetime to complete. There are books to study, things we must do, knowledge and faith we must acquire … and there are tests. Oh, there are tests. 

There are tests of prosperity; what we do when the sun is shining and our pockets full or overflowing. There are tests of faith; what we do when the lights go out. Test of hardship; how we respond to our difficulties. Test of anonymity; what we do when nobody is watching. So many experiences we encounter … so many learnings, if we become students of the soul. 

When I consider this hardship I pray that the child in my heart can rise above this profound sorrow. I know I can. And I will. But losing my son has broken every bone in my body, wrenched my soul and pulverized my heart. With all that I understand and have felt spiritually my heart still cries out for my son and I miss him terribly. 

This hardship has taught me, however, that while I may plea to God “please no” … if the answer is no, I must change my plea to “please help me know.” That is the foundation upon which we grow.

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As a young boy I used to get lost in the back woods of Edina, Minnesota. The wilderness was thick with all manner of vegetation, rocks and hills – and because of the very nature of nature you couldn't see very far. And when fog settled, you could see almost nothing. 

Being lost as a young child reminds me of the landscapes of my life. Sometimes I sit upon a vista with clear skies and can see far into the horizon. Other times I am scaling my Everest – afraid I might fall. Still, other times I am traveling through a wilderness of hardship where the fog of the unknown makes seeing what’s ahead almost impossible. 

Regardless of the landscape upon which I journey, I have learned to travel by faith. That doesn't mean to travel blind or dumb, but to learn to see with my other eyes and hear with my other ears. There is a difference, and it is significant.

As Mitch started to slip away, I found myself descending into a dark wilderness wherein I could see very little. The further we traveled into this wilderness of grief and sorrow the more difficult the terrain and the thicker the fog. I would hold my son’s face and tell him how much he meant to me. I would kiss and hug him and try to assure him – but inside I was terrified of losing him. I love him so very much. With each minute, each day, the wilderness became ever dark and perplexing. I have never known a wilderness such as this.

My wife came into my office today with tears in her eyes and said, “I know it’s officially tomorrow night (the morning of March 2nd) that Mitch passed away, but the day was on a Friday last year. Today is Friday.” Tears filled my eyes, too. I realized then I am still navigating the wilderness of grief. And what a wilderness it is… 

The other day I stumbled upon a journal entry I wrote when I was 19 years old. I had all but forgotten about the dream – but somehow I had the presence of mind to write it down over 20 years ago. In my dream I was travelling in a forest heading to some place important, but I couldn't put my finger on where. I also had a wife and children but I couldn't see their faces and I didn't know their numbers, yet I knew they belonged to me and me them. Each of them was carrying picture frames. As we made our journey through the thick forest, at some point I realized someone was missing and I began to desperately search for my child. I was in a panic, and then my dream ended.

As I read my journal entry I lost my breath. I am now beginning to understand the meaning of that dream so many years later - and I can’t help but contemplate what God was trying to tell me about my future. He spoke to me, and I listened … and I wrote it down… but I didn't understand it. If there is one thing I've learned in my own journey; it is one thing to receive a personal revelation (or answer, or warning) but quite another to understand it. 

I have discovered that while navigating my wilderness I must learn to rely on my spiritual hearing, not just spiritual sight. And learning to hear is a delicate and personal thing – borne of personal acquaintance. 

Suppose I told you outside there were 2,000 mothers – one of which was mine. And say I blindfold you and told you to find her. I could describe her to you; I might say she’s 5.5, blonde short hair, a beautiful smile and kind voice. If I sent you out there to find her ---- you couldn't do it. Yet if you were to blindfold me I could find her in minutes. Why? Because I know her voice. So it is with God. 

I am still navigating the wilderness of grief - almost as if blindfolded. But I have ears to hear. And while I may stumble and fall to my bruised knees in sorrow, I will get up and follow that voice that whispers ever so gently. A voice that is so quiet that if I’m preoccupied, I may not hear it at all. 

One day, at the end of my wilderness, when I have learned what I must, I know I will see my son again. Only this time I will hold Mitchell’s face not in sorrow but in deep relief … for I will have closed the loop on that dream I had so many years ago; I will have found my son who was lost from my sight. And I will thank my wilderness for teaching me to hear my Father’s voice … a voice that is leading me home. I hear Him.

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I purchased this coin at the gift shop at Primary Children’s Hospital. 

It was only a few days earlier we were told our son would die and likely only had a few days to live. Shocked and bewildered, my wife and I began to navigate a sea of trouble and grief for which we were scarcely prepared. Hell came barging into our lives and spared no one.

Each night I sat at Mitchell’s hospital bed and watched various monitors tethered to his body display the chaos that was unfolding beneath his skin. This catastrophe of hurricane proportions was so great, and in the doctor’s minds unstoppable, they turned off the audio alarms because they wouldn't stop beeping. I have seen many scary things in my life and none were as scary as what I saw on those screens. I watched my son’s chest pound as though a grown man were inside his body punching his way out. His tender heart was struggling so hard to support his little body. By this time my son had also lost a great deal of weight and he looked sickly. My young son and soul mate, my baby made of sand, was slipping away and no medical intervention could save him from DMD. If ever I found myself in a time of trouble, there was none so great as this. 

One night, at about 3AM, unable to find rest, I sat by my son and posted “Mourning with Those that Mourn” thanking those who were following our son and offering him words of love and encouragement. I was reminded that no matter how impossible some challenges seem, there is always something to be grateful for. And in that moment I was grateful for many of you who took time to love a stranger. If ever there were a testament to the goodness of humanity, it is seen in your goodness to my son. Thank you … from the depths of my soul, I thank you.

In that post I wrote: “While navigating the labyrinth of pain and sorrow, Natalie and I often talk about finding joy, and we believe it is all around us. I think joy is a natural byproduct of gratitude. It's so often the little things, if appreciated, that bring joy to life and amplify happiness. There is so much to be grateful for. There are tender mercies all around us, every day.” 

In times of trouble, gratitude is a lifeline; in times of joy, it is an amplifier. If I believed that then, I believe it even more today. In fact, I don’t just believe it, I know it.

I have also found gratitude an effective means of rising above that which would take us down. It doesn't prevent sorrow but it gives context to pain and suffering and keeps us from getting so dizzy in grief we forget there is still something to be grateful for. If our soul is to be likened to soil, gratitude is the great fertilizer. It lets light in, it nourishes and softens our hearts so other things may grow. I have never known a bitter man who was grateful, nor a grateful man who was bitter. Gratitude is divine. Gratitude is a gift from God.

It is to this end I will always pray … to be blessed with the gift of gratitude every single day. And if I am blind to the gifts my Father so generously gives me, I pray for eyes to see. For gratitude can fill our hearts even when our arms are empty.

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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.