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“Oh, little child, how I watched you while you slept. So sweet and soft … it was my heart that you kept. Now you live in that place beyond the hills … on the far side of the sea … a place I hope to visit in the quiet of my dreams. ”

— Christopher M. Jones | Mitchell's Journey

When I was a young child I remember being awoken by light emanating from the hallway as my parents opened my bedroom door to check on me. Sometimes they would quickly shut the door, afraid to wake me. Other times they lingered a moment and looked on as if to ponder. As far as I can remember, I always awoke when they checked on me but pretended to be sleeping. 

I remember wondering why my parents did such a strange thing. After I became a father I finally started to understand. When my children were infants, my wife and I would gush and fawn over the crib as we saw our tiny baby breathe so softly. “What miracle is this?” I would think to myself, humbled at the beauty of life and family. As they grew from toddler to child, that tradition of looking at our sweet children while they slept evolved; we would often giggle at how they passed out with toys in their hands or books on their faces. I have a photo of Laura-Ashely passed out at the top of our staircase, face smashed against the carpet. I still giggle when I look at that photo. 

We loved to look at our children while they slept because they were our creation and in every way that matters, they had become an extension of our heart and soul. As exhausting as parenting can be, I have discovered a certain renewal happens when we know they are safe at home.

After Mitch was diagnosed with Duchene Muscular Dystrophy, I found myself almost nightly kneeling at his bedside as he slept, pleading to my Father for my son’s well-being. My tradition of checking on my children turned into a nightly, tear-drenched ritual of prayer and pleading to my Father … for I knew that I, too, was a child who was loved and hoped that He might hear my trembling words. I pleaded for a miracle, that I might trade places with my son, and that somehow I might suffer for him. If only my son knew how often I poured out my heart and soul heavenward while he slept. If only he knew how oft I watched over him at night and begged that this bitter cup might pass under the canopy of a dim starry light.

In this photo Mitch was home on hospice, unaware his days were numbered. He asked me to tuck him in, so I decided to cuddle with him for a bit. We talked for a while. He told me about a fort he made in Minecraft and he wanted to show it to me, I smiled and told him I couldn’t wait. I told him I loved him 100 times that night and that I was so proud of him. He would smile and say, “I wuv you too, Dad.” 

Soon I began to drift to sleep – I wasn’t sleeping much and I was so very tired. At some point Natalie came to check on us and she took this photo with her phone. Little Mitch was still awake, cuddled under my arm. Only this time he was watching me while I slept. I wonder what he was thinking. More importantly, I hope he felt loved. Though he sensed mortal danger was near, I hope he felt a little safer in the clasp of my arms. I hope.

Oh, little child, how I watched you while you slept. So sweet and soft … it was my heart that you kept. Now you live in that place beyond the hills … on the far side of the sea … a place I hope to visit in the quiet of my dreams. And if Heaven will be so kind, my heart will open up and you will read what’s on my mind. You will know that I would have fallen for you, if I had the opportunity … it is true. I fought to save your life, you see. But then I realized it was you who was saving me. I am different now. At least I hope to be. One of Heaven’s strange ironies.
 

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A few years ago I took my kids camping high in the Wasatch Mountains on what turned out to be one of the coldest days that winter. The decision to go winter camping was last-minute, so I called my wife and asked her to throw our tent in my truck so we could leave the minute I got home from work. With that, my dear wife quickly gathered sleeping bags, extra blankets, dry clothes and made my famous tinfoil dinner. (I’ll share the recipe another time)

We raced into the mountains so we could find a camping spot before night came -but before we arrived at our destination, it was already dark and the temperature was falling rapidly. I carried Mitch on my back a few hundred yards because his legs were much too weak to walk through the snow. Within about 15 minutes we had started a roaring camp fire so the kids could get warm while I set our tent. Within minutes I discovered Natalie accidentally packed what was essentially a mosquito net for summer picnics. It offered virtually no protection from the bitter cold. I told my boys it isn’t a good idea to quit at the first sign of a struggle … that we can always find a way if we look for a solution. After some discussion, my boys decided they wanted to stay anyway. 

That was the longest and most difficult camping trip of my life. I didn’t sleep more than 15 minutes at a time. No sooner would I doze off that I would awake in a panic, spring from my sleeping bag and make sure my boys were covered and warm. I would then lay my head on the frozen floor and peer into the starry sky through the mosquito net thinking to myself, “What on earth are we doing?”

The next morning we awoke and started another roaring fire. A warm cup of hot chocolate was on the way when Mitch came to me and said, “Hey Dad, let’s not ever do that again.” 

“Deal”, I said with a chuckle and then kissed his face, “I am sorry you were so cold.” Mitch smiled and said, “It’s okay Dad. It was fun … but not that fun.” We drove down the mountainside and I took our kids to the first restaurant we saw and I ordered them each a stack of hot pancakes and scrambled eggs. As I saw my boys dig in and chuckle between themselves over the mosquito net, my heart was overflowing. I thought myself the luckiest man on earth. I was so glad to be a dad.

There have been times, in moments of parental doubt, I wondered if dragging my boys out in the cold, away from our warm home was a good idea when they were so young. But then I would find little folded pieces of paper on my nightstand addressed to me from Mitch. In each piece of childhood origami was a hand drawn picture of adventures past. Not once did he draw pictures of Disney Land or expensive vacations, instead he re-created fire pits and fellowship. He seemed to interpret struggle with a measure of fondness. He would draw pictures of our spring camping adventure when we nearly got flooded out by a torrential downpour. He made drawings of the winter camping trips we vowed to never do again. From the boiling hot deserts to the dirty, muddy hills … the things we disliked in the moment, turned out to be the things he remembered and loved the most.

In like manner, when I think of our early days raising a family … when exhaustion and discouragement nearly broke us … those are some of our sweetest memories. I think little Mitch was on to something; that perhaps sometimes the hard times turn out to be our happiest times. Certainly not in the moment … and maybe not all the time. But sometimes.
 

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Laura-Ashley had taken Mitch on a stroll down the hall while we spoke with the transplant team. By the time this photo was taken, we had already been told the devastating news – Mitch would be denied a heart. I remember this moment well. I sat across from Mitch and listened to his sweet voice talk about a video game he wanted to play. I struggled concentrating on his words; for while my son was focused on youthful things, I was weighed down by mortal things. The prospect of certain death weighed heavy on my shoulders.

Later that night I posted this video about our experience: vimeo.com/54167124

I entitled that video “No Exit” because for my son, there appeared no exit … no way to escape the catastrophic muscle wasting of Duchenne Muscular Dystrophy. No way to escape death. While our son’s cardiologist presented transplant as an explorable option, I realized quickly the decision had been made long before we arrived. So, I was confused why we were there in the first place. 

I tried to hide my anguish from my son and hid my sorrows behind a fading smile. I kept it together – but Mitch knew me and sensed something was wrong. Later that day, Mitch asked me, “Dad, what are you thinking?” I said, “Son, I’m just thinking about the value of time and how much I treasure every minute I spend with you.” Mitch smiled and said, “I like spending time with you, too, Dad.” With that, he turned and skipped down the hall in his funny way. I turned my head and wept.

A few months later, I would see this same transplant team walking about the cardiac intensive care unit rushing to the aid of other children who qualified for a transplant, while my little son lay in the same unit sentenced to death. Imagine the heartache, confusion and desperation we felt – then magnify those feelings a million-fold. That, then, will represent only a grain of our sorrow. 

I asked attending doctors about an LVAD and they uniformly told me that wasn’t an option. It wasn’t until Mitch was home on hospice we heard from Pat Furlong at Parent Project Muscular Dystrophy who offered to help get Mitch an LVAD. For reasons I will detail in future posts, and in greater detail in a book, the promise of hope was dashed by a series of heartbreaking realities. The hardest reality of all, there was no exit.

It was only a few months after Mitch passed that I was asked to speak at PPMD’s international conference about our experience. A few doctors in the medical community told me how angry they were that Mitch passed away – but after hearing my address about my son, they realized Mitchell’s purpose (at least one of them) was about something much more – and their hearts were softened. 

Anymore, I’m not afraid of death. In fact, in times of deep grief I have wished for it. But I also value life and the hope it offers. Though I have traveled broken roads of grief and sorrow, I have also discovered wells of peace and healing. It is not all terrible. I worry less about my earthly exit and more about how I exit. 

The hard reality is none of us exit this life alive - and that is what mortals misunderstand. We confuse death as the end - but it is not. It is a return to our previous state. Death will come to each of us … and for most of us, we will see our loved ones go before us, some will even suffer greatly before they go. But everyone goes. Our hearts will be broken - sometimes more often than we think our hearts can handle. In our loss, we will long for the companionships we once enjoyed; Heaven knows how I ache for my son's hand. 

The point is, sorrow will become familiar to each of us - and it will become our teacher or tormentor. In the end, we decide what meaning suffering has for us and whether it breaks or builds us. 

This photo was taken almost exactly 3 years ago. It feels like yesterday, yet at the same time a world away. I have experienced so much sorrow and self-doubt between this moment and today. But I have learned a great deal and I'm not about to throw that away. That is what my son taught me ... I have today.
 

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I can still hear the evening crickets on this nearly magical summer eve. Like a sunburn, I can feel the warmth of summer on my skin. Mitch pointed into the dark water as Wyatt listened intently. “See, those fish? They are a family.” Wyatt replied, “Do they like gummy worms?” Mitch furrowed his brow a moment and thought … then said, “Probably. But I think they like Doritos best.”

I chuckled at my little boys. I wanted to hug them that instant but refrained because this was their moment. My heart was overflowing with a kind of fatherly gratitude I had never experienced until that moment. I dreamt of becoming a father, but I never imagined a love so deep. Part of me wanted to freeze this moment in time and live in it forever; but I knew tomorrow would bring new blessings – so I welcomed the passage of time as both a blessing and opportunity for new discoveries. 

When Mitch first learned he was going to be a big brother, he was so excited. He wanted to usher his wee brother into a big world filled with wonder. With a heart filled with love, I often found Mitch kissing baby Wyatt’s hand while he slept. In time, not many years later, I would find Wyatt kissing Mitchell’s hand as he slept, barely breathing and slipping away. A brutal irony that pains me and heals me at the same time.

Just before Mitch was admitted to the hospital, I called my neighbor who was also my Bishop at the time (a religious leader in my church). I could hardly talk through my tears and broken voice as I said, “Will you please give my son a blessing?” Within minutes this inspired, selfless man came rushing over. As we lay our hands on my son’s head, tears streamed down my face. I quietly gasped for air (a few times it was audible) and fought to keep my composure as I heard this good man share words of comfort, blessing and heavenly insight. He fought back tears, too, as he shared inspired words our Father wanted Mitch to know. A few minutes after the blessing, Mitch said in a whisper to his brother Ethan (observing our tears), “It felt like it was raining.” Such were our tears.

There were many times while Mitch was home on hospice, as he slept, that I wet his hands and neck with my tears. I prayed mightily to my Father for a way out – I begged that He would take me instead. But a way out would not come and soon I would lose my little son. In time, I would find myself in a hell I was afraid to imagine. Yet there I was, in the darkness and heavy in sorrow. I wrote of grief, “There are days … sometimes agonizing moments … the gravity of grief is so great it feels like I’m walking on Jupiter. It’s a place where your chest feels so heavy even breathing is difficult. I have come to learn that once you lose a child you leave earth’s gravity forever. You may visit earth from time-to-time, but Jupiter is where your heart is. And from what I can tell, we will live the remainder of our lives in the gravity well of grief.” (see essay, Walking on Jupiter, June 3, 2013) 

In time, after much weeping and soul-searching, I would find myself leaving the Jupiter of which I spoke. The gravity of grief no longer had the power to take my breath or steal my joy – at least not all the time. This journey from Jupiter was welcomed by my weary soul – for I wondered if the prison of such sorrow was a life sentence. Thankfully, it was not. I still cry for my boy. I wept while writing this very piece. But I feel more love, peace and gratitude now than I have ever felt sorrow – and that’s a lot. 

This photo not only holds a tender story of a time long gone, but a metaphor for today. I find myself where Wyatt once stood in this photo. Next to me, on the edge of the unknown, Mitch, my son and brother, points into the dark water at things I cannot yet see … and he whispers to my soul words meant just for me. 

In time, I will see.