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Just before a painful procedure, Mitch grabbed my arm and squeezed my hand as if to hug me. Although I was trying to love and comfort my dying son, he seemed to find greater comfort loving me. I loved how he loved.

“Looking back, I have not had the life I wanted … but it has been everything I’ve needed. ”

— Christopher M. Jones | Mitchell's Journey

It was a strange thing to watch the hospice nurse keep our son healthy, just long enough to die. She did a marvelous job managing our son’s pain, guiding my broken wife and me through the process of death and dying, and offering insights on how to cope with grief. She warned us that everything we were experiencing at the time was the easy stuff – and that much harder, darker days were ahead. She was right.

As Mitch and I were hugging hands, it took every ounce of strength to hold back my tears – for I wanted to bury my head in the couch and weep like a child. I thought to myself, “This is not the life I wanted. How can I possibly save him?” My bright dreams of becoming a father had turned into a nightmare of the blackest velvet pitch.

My son would soon die and I would experience a grief so great, there are simply no words to describe it. Then, my professional world turned upside down. Good people, who might have been mentors, turned dark and twisted. Life went from bad to worse. When I thought things couldn’t get worse, life became darker still. Grief would soon take a toll on my surviving children – which as a parent was heartbreaking. I don’t write about their grief journey because I respect their privacy. But I will say that sibling grief is real and my wife and I do all that we can to help our children the best we can.

Looking back, I have not had the life I wanted … but it has been everything I’ve needed. I didn’t want to lose little Mitch – but his life and death have changed me for the better. I am not mad at God. But I am sad … and that’s okay. I don’t allow other life challenges, disappointments, and failures to make me bitter – I’m trying to figure out how they can help make me a little better. I have a long, long way to go. I am still learning to live with disappointment and grief -- but I am also learning to live in harmony and peace.

I know when I die, I will go to that place beyond the hills and see my boy again. And if there are no tears in heaven, I will be the first to make them – and the stars will bathe in them. Perhaps we will hold hands like this again – where I try to comfort Mitch and he comforts me. I have a feeling that we’ll look back on our lives and say “Well, it wasn’t the life we wanted but it taught us everything we needed.”

When I see life through that lens, I understand things differently, indeed. For we are souls eternal; gathering light and knowledge, even to infinity.

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“Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.”

— Christopher M. Jones | Mitchell's Journey

Mitch was wearing one of his favorite new t-shirts a loving neighbor gave him when they learned he was dying. The shirt bore the words, “Watch me win.” Brave words we often say when we shake our fists at an implacable disease – as if our will alone could stave off our frail mortality. Though human will is powerful, it is no match to God's will. Though he didn’t win the battle with DMD (not a soul does), he did win the bigger, more important fight. Mitch was a good human – and at the end of the day, that’s the only fight that matters. His philosophy was to be nice to others and have gratitude for life – for in the end nothing else mattered. 

I remember asking Mitch what he was thinking just after I took this photo. He said, “I’ll tell you later, Dad.” He would have this same look of knowing a few more times – and each time I asked he would respond, “Later.” Mitch never got around to telling me. Yet, I think I know.

As my son played with his toys, I couldn't help but notice the vein just above the bend of his elbow punctured by a tube that ran up his arm and pumped medicine directly into his heart. At first Mitch thought the medicine was making him better, but as death inched closer, he came to understand it was barely keeping him alive and that it wouldn’t last.

Slowly, almost invisibly, an old soul began to reveal itself. Not only was my son changing … my eyes were, too. I began to discern things that were kept from my mortal sight until then. There were times I thought to myself, “Mitch who are you, really? What is your real age and what are you sent here to do?” Though he was my child and I was asked by a loving Father to raise him, I felt like his soul was much older than mine and that, in a very real way, he was raising me. Heaven, it seems, is filled with curious mysteries.

Yet despite my growing sense he had an almost ancient soul … there he was, still very much a young child in need of love and comfort. I was beginning to see two things at once. I think Mitch was, too. I think he didn’t share with me what he was sensing because he didn’t want to frighten or disappoint me. I think he tried to protect Natalie and me in the same way we tried to protect him.

Not many days from this photo Mitch would struggle in his bed and say, “Dad, I don’t think I can survive.” Words that are forever seared into my heart and soul. At that moment I thought to myself, but didn’t say the words aloud, “Son, I don’t know how to live without you.” Then death came gashing and crashing through our door.

I would soon learn to look upon grief in the same way I saw my son; two things at once. Although the surface of grief is plain to see, seemingly clothed in pain and agony; there is so much more beneath – a certain beauty the human eye alone can’t see. It isn't easy or pain free - but somewhere in the midst of suffering there is purpose and a greater meaning. There are always two things at once: the thing that happens to us and then its purpose and meaning. We just need eyes to see.
 

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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.

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It was the summer of my son’s passing that I found myself alone for a few weeks. Circumstances were such that my kids were at various camps and Natalie was away from home helping them. On this night I lay on the grass next to my son’s headstone as the summer sun set. I loved to hear the sound of crickets and lay on the soft carpet of grass that covered my dear son. Though the world was harsh and hard, there was a certain softness to this place.

Looking back, this period of my grief journey was especially surreal. The gravity of grief was so great that I could hardly breathe most of the time. Beneath the veneer of my soft smile and dry eyes was a soul that was in a state of constant weeping and grief. It felt that earth and my life before was somewhere far away. 

If I wasn’t at work or with my wife and kids, I wanted to be at the cemetery, next to my son. I don’t entirely understand why I had such a strong desire to be near him – I think on some level the father in me subconsciously wanted to comfort my son who, deep inside, I worried was frightened. Looking back, I am beginning to wonder if I was the one who was frightened and in need of comfort.

So on this summer evening, as the sun fell behind the hills, I jotted the phrase “A Mortal’s Guide to Suffering.” I didn’t know exactly what to do with it … I only knew I needed to remember those words. It has been two years now and I haven’t been able to put that phrase down. It keeps surfacing in my mind and heart – as though it’s a whisper from that other place to explore its meaning in my life.

Since then I’ve begun working on a series with that title, A Mortal’s Guide to Suffering. It is not a pulpit or a collection of “life lessons” … for who am I to teach anyone? I am the least of everyone. I’m just a fumbling student who is trying to listen to my Father, a master teacher, who tenderly and patiently teaches me hard things. So in a way, it is a journal of observations and wonderings.

I have received many messages from people all across the world sharing stories of hope and hardship, love and loss. I have wept as I’ve read your own journeys. I have discovered there is a great deal of silent sorrow in this world, but there is also a great deal of hope and healing. At first I was confused why people found solace in reading another’s sorrow, my sorrow. I think I understand it now, at least to some degree. 

Perhaps the first healing step in a mortal’s journey with suffering is to discover we are not alone in sorrow and that other people understand a darkness we thought was unique to ourselves. It would seem the second step in our mortal journey with suffering is to not only find that others care that we hurt, but to discover the healing power when we learn to care for others, despite our hurt. I don’t believe it’s possible to overstate the healing power of empathy. I have discovered that empathy not only repairs part of the sufferer, it also repairs an invisible part of the person who does not appear broken at all. 

And therein lies one of mortality's great deceptions, to think any one of us are unbroken. To be mortal is to be broken; and while everyone is broken in one way or another, most of us are broken in many places, great and small. Some hide their brokenness in anger and bitterness – they lash out and try to harm others, mistaking that rush and thrill for wholeness. Others retreat in quiet sorrow. Some try to mask or numb their brokenness in things that ultimately hurt themselves and others. Still, there are some who hide their brokenness in egotism and by appearing to be exactly the opposite of flawed. There are many things I hope to become in this life – chief among them is I hope to always be real.

So, in the coming months I will share some of my own personal discoveries of being mortal and suffering – and what I make of it. They’re not life lessons nor are they meant to be a digital pulpit … instead they are a lowly journal ... a guide and road map for me, covered in dirt and dust from stumbling. I do this so that if ever I get lost, I can look back and see the journey and make sense of it all. I don’t know many things – but one thing I know is I am a mere mortal with broken bones; and every day, however much I stumble, I am finding my way home.