WHY WE SUFFER

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As Mitch began to drift away, I would look at him with deep sorrow in my heart. I desperately wanted to scoop him up in my arms and take him to someplace safe. A place like the children’s books we often read to him – a place of hope and happiness, joy and dreams. My little boy once glowing bright with laughter and childhood had become a dim candle about to flicker out. The light in his countenance had been growing dimmer by the day, and I was greatly pained therewith. When I took this photo I had the distinct impression we were no longer counting the days, but the hours.

I remember cuddling next to my son just after I took this photo. I held him gently but firmly and said, “I am so sorry this is happening, son. You are so brave. I think sometimes God sends us the little ones like you to teach us grown-ups what it means to be truly grown up. And Mitch, when I grow up, I want to be just like you.” Mitch squeezed my hand and smiled softly. I kissed his cheek and held him close to my chest as he drifted away, soft as a feather, into an afternoon nap.

While Mitch slept, I wept.

I wept so hard the bed was shaking, and I worried I would wake him. The grief I knew then was but a foretaste of the grief to come. It turns out death was the easy part … for I'd soon experience a kind of bewilderment, emptiness and longing that would become a more painful hell.

I learned long ago it isn't productive to raise my fist to the heavens and wonder why we suffer. Instead, I learned to turn my ear heavenward; to listen for secrets to the soul and learn what I was meant to learn. Too often people get hung up on asking the wrong questions – and therefore get no answers. They ask “why would God do this?” When we hurt, it can be tempting to shake our fists at the Universe and bemoan our circumstance as though we’re being singled out or treated unfairly. But the last time I checked, life isn't fair, and it rains on the just and unjust. Why should we be the only exception? The other day I learned over 150,000 people die each day. Countless others will suffer all manner of afflictions. In the few minutes it might take to shake our fist and complain about our own lives, hundreds of people will have passed from this life to the next, and a great many more will mourn their absence. The world is filled with grief and suffering. Some sorrows we bring upon ourselves. Other suffering just happens, whether from an act of God or simply life in motion.

At least for me, I've come to discover suffering and sorrow are an important part of life’s learnings. Any more I worry less about the origins of my sorrows – for what difference would it make? Surely God isn’t caught off guard or surprised by the events in our lives. Whether He’s the author of some of our sorrows, as a divine teacher, or simply a patient tutor as we struggle with life in motion … He could change the course of our sorrows if He wanted to. The fact He often doesn't sends a compelling message. The question I ask myself is, “Am I listening?”

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.
— Christopher M. Jones | Mitchell's Journey

So, as I laid next to my dying son, weeping in the deepest of grief, I felt a pain beyond description that left my soul weary, bruised and weak. I didn't want my little boy to go, for he was my tender son and I loved him so. Though I prayed mightily for his safe return, the answer I received was “No, my son, for there are things you must learn.”

Thus began my journey with grief, down a bewildering path in search of relief. And though I still hear the deafening sound of death’s terrible toll, I have come to understand our mortal bodies are but clothing to the soul.

On this sacred weekend, I reflect on life’s crucibles and am grateful; not grateful that we suffer, but because we can be made better because of it.

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A CROWD OF ANGELS

It wasn’t long ago a father reached out to me in grief.  He asked, “Do you believe in angels?” 

 This was my response:

 “Yes, I do believe in angels and that they walk among us [sight] unseen. Sometimes, if we're quiet and listening, we can feel their presence.

 Sometimes.

 We had some pretty profound moments with Mitch after he passed away. As Mitch was in the process of dying he slept a lot. Natalie and I were in a state of deep despair and couldn't feel as easily what others felt. Some people, not knowing what was happening at our home the last few days, dropped some gifts or notes at our door. They would leave our house and send us a text saying things like, "I'm not sure what's happening at your home, but I felt something I've never felt before. It felt like I was walking through a crowd of angels.”

 I’ve had some spiritual experiences in my life, but few as sacred as this night.  I’ve written about the night Mitch passed in earlier posts from the viewpoint of everything going dark, and how only when my spiritual eyes adjusted to the darkness did I begin to see the stars.  The stars were a metaphor for little blessings in my son’s life that were always there, but I didn’t have the eyes to see them.  Not until everything went pitch black.  An experience that is simultaneously as beautiful as it was terrifying.

 Tonight, I want to share something about that same experience but from a different viewpoint.

 As Mitch lay in his bed, unable to move his body or open his eyes – he could scarcely squeeze our hands in answer to questions.  His weary heart was about to flutter to a stop.  The time was drawing near, and Natalie and I were so very afraid. 

 At various times throughout the night, people came to our door and left gifts for little Mitch in the hopes of lifting his spirits during this sacred transition.  I can almost hear the quiet shuffling of feet in the snow as visitors came reverently to our door to leave a token of love and care.   

 Mitch would never see those gifts in mortality.  They weren’t in vain, however, for they were tokens of love and compassion that would lift our weary hearts after Mitch had gone.

 In a strange way, my home started to feel different … like it was transforming into a busy train station.  I sensed a sacred gathering of others.  Others I couldn’t see.  I don’t pretend to know who was with us or what was happening … I only knew something was put in motion and that other souls were drawing near.  I could feel it in the marrow of my soul and it brought me a measure of peace and calm.  I was hurting deeply, but I wasn’t drowning.

 Looking back, I can see that even in our agony, we were supported by spirits unseen.

 Today, as I face hardships and the unknown, I try to remember this dark night.  And I am reminded that we are never really alone.

I DON’T KNOW HOW TO HELP, BUT I KNOW HOW TO BE A FRIEND

Every-so-often we’d take our kids bowling for family night. In my culture, that’s a long-held tradition of dedicating one night a week to spend as a family. On these bowling adventures, we always enjoyed getting a plate of nachos, a chili dog, and a basket of french fries. The food was never good. In fact, it was awful. But, to spend time with family always seemed to make up for terrible food. Mediocre nachos just taste better when you're giggling.

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.
— Christopher M. Jones | Mitchell's Journey

Surrounded by bad food and good company, we’d spend the next hour or two cheering each other on while competing for the highest score.

By this point in his life, Mitch wasn’t strong enough to hold a bowling ball, so family members helped by positioning the ball on an adaptive bowling ramp.  Mitch smiled as he squinted his eyes and slightly moved the ramp at just the right angle.  Then, softly, he’d push the ball down the ramp, and it would hurl down the lane.  When he’d get a strike, Mitch would chuckle as I’d blend sports terminology.   “Great!  You got a goal!” or, “Nice touchdown, son.”  Mitch and I shared a pocket full of inside jokes that always made us smile.

On this occasion, Natalie’s sister and her family joined our bowling adventure.  Mitchell’s closest cousin, Hunter, was always by his side, cheering him on – both bowling and in life.  At one point, Wyatt placed his hand on Mitchell’s back and said, “Nice job, Mitch!”  At this moment, I thanked my Father for the gift of family and friends.  I was especially thankful Mitch had a loving circle of his own.  Mitch was blessed with genuine friends.

Just today I had lunch with a dear friend and colleague.  He’s had a blessed career, and I have admired his desire to serve others with his good fortune.  About two years ago, however, he experienced a tremendous personal hardship that broke his heart and shook his soul.  During his darkest hours, I remember praying fervently that he would find a measure of peace each day as he learned to walk his own journey with grief.  As we were catching up on each other’s lives, he shared something a friend told him during a moment of darkness, and I learned a beautiful lesson.  His friend said, “I can’t imagine what you’re going through.  I don’t know how to help … but I know how to be a friend.”

When I heard that tender phrase, I was overwhelmed by its power and simplicity.  It’s another way of saying, “I want you to know I care.” 

Those are beautiful, healing words: “I don’t know how to help, but I know how to be a friend.”  It acknowledges the uniquely difficult journey of the sufferer while offering a shoulder to lean on, a listening ear, and an understanding heart. 

Heaven is never so close as when we’re with loving family and friends.  And when someone is going through hell, we can bring a little piece of heaven into their lives by simply being a loving friend.

So, when I look back on this tender moment with little Mitch surrounded by kids who didn’t know what to do, but knew how to be a friend, I’m reminded of the supernal goodness of children. 

I cherish this memory. 

When I feel grief cast its shadow on my soul, I scoop into my pocket of cherished memories and pull out little gems, like this moment.  They fill my heart with gratitude, meaning, and purpose – which, combined, serve as a lamp unto my feet when the path grows especially dark.  Today I was reminded of another gem to serve a broken heart: that to be a friend is one of heaven’s healing arts.

THE OBSTACLE IS THE PATH

The night Mitch passed away a caring friend, knowing death was near, offered to have our youngest son stay the night at their home. Our family was about to suffer one of life’s greatest blows – and they wanted to help.

As a father, that is the best I can hope for … to teach my children what to do, then get out of the way and let Heaven do its work … so they may know for themselves.
— Christopher M. Jones | Mitchell's Journey

That next morning little Wyatt returned home and entered our front door, unaware his older brother had just passed away. “Wyatt, sweetheart, will you meet Dad and I in our room? We want to talk to you about something”, Natalie said softly. Wyatt dropped his pillow and blanket to the floor and said, “Sure thing, Mom.”

As young Wyatt entered the room, we sat on the floor at the foot of our bed. “Wyatt, I’m so sorry ... Mitchie passed away last night,” Natalie said with a cracked and tattered voice. That very moment, Wyatt’s eyes filled with enormous tears and began streaming down his cheeks. “Can I say goodbye?” Wyatt said in a trembling tone. “I’m afraid you can’t, sweetheart, he is already gone. I’m sorry.”

Wyatt buried his head into his mother’s embrace and wept. For the next 30 minutes, I sat breathless as I saw my wife, a tender-hearted mother, grieve deeply over the loss of her son while at the same time trying to comfort her youngest. In a way, coping with the loss of a child while helping our children can feel like we’re trying to save someone from drowning while we're drowning ourselves. That heavenly paradox keeps us afloat: for when we comfort others, we somehow find comfort.

In this tender moment I, too, wept for Mitch, for my wife, for my children. I wept for the whole world. I didn’t want anyone to suffer and would have given my life to save my family (or any family) from such sorrow. Sorrow, it seems, is a mortal’s birthright.

After an extended period of tears, Wyatt lifted his head. Just then, Megan (our pet dog) worked her way between them to kiss Wyatt’s cheek. It was as if she knew how badly he hurt. Wyatt smiled softly as Natalie continued to embrace our son.

For the next year, young Wyatt was afraid to be alone. Though we often talked about life after death and our knowledge that Mitch was in another place, Wyatt’s young mind struggled to come to terms with the finality of death. Often, while playing in our living room, if Natalie stepped into another room or was out of sight, Wyatt would yell out with a worried tone, “Mom?!?” Sometimes his tone was that of a startled and drowning child - he was so afraid to be alone. In time, Wyatt learned that he would be okay and that he needn't worry about his own mortality. Those are difficult lessons for a 7-year-old child to learn.

There are people who ask why God would allow such suffering to happen to an innocent child, as though He were indifferent or uncaring. I have a different view of my Father, and I fall to my knees with gratitude, despite the sorrow my family has experienced. Although Wyatt experienced the trauma and sorrow of losing his brother, he also had profound experiences with prayer during that time … almost as if it were a Heavenly compensation. Wyatt had personal experiences that taught him he is not alone. Through his own suffering, Wyatt gained a deep testimony of prayer. He no longer believes in my words, he knows for himself. As a father, that is the best I can hope for … to teach my children what to do, then get out of the way and let Heaven do its work … so they may know for themselves.

I am not grateful for pain and sorrow; in fact, the mortal in me wishes to avoid it. However, I am grateful for the heavenly lessons we can learn from hardship. For as that old Zen proverb states, “The obstacle is the path,” the very things that challenge have the potential to change us for the better, if we allow it.

My Father knew it. I came to know it. Now my little son knows it. The obstacle was, and always will be, the path.

THE FLIPSIDE OF SERVICE

We sat in the upper level of Shriners Hospital waiting our turn to visit with the orthotics department. From a distance, I saw Ethan and Mitch whispering in the corner of a vast open space designed to let children play. I could tell by the looks on their faces these young boys were conspiring to have fun. A few moments later I saw Ethan sit on a scooter and Mitch started pushing him with his electric chair. They both laughed and laughed as they scurried about the hardwood floor, sometimes at exhilarating speeds.

Along the wall of this open corridor, I saw a chalkboard where a young child wrote, “I’m sad.” I’ll post that photo in another story about suffering. As I read that simple phrase, clearly written by young hands, I began to cry for that mystery child. My heart broke and I wished I could share a portion of my own health and give it to others in need, including my son. I would have given my life to save my son.

So, when I seem to struggle or get lost and can’t find my way, I stop to catch my breath … then find someone I can serve that day. It doesn’t take much to turn a bad day around – if I can help someone in need and my heart goes from lost, to suddenly found.
— Christopher M. Jones | Mitchell's Journey

As I turned attention back Mitch and Ethan, my eyes began to dry and my heart was filled with gratitude. Though life can seem cruel at times, I saw evidence of heaven’s hand right before me. My eyes began to see the tender mercy these two boys were to each other. In that moment, I knew that while God wouldn’t remove Mitchell’s hardship, He sent Ethan to help ease the way.

Mitch was about to endure a great inconvenience. Within a few hours, he would have both legs placed in cast for a few weeks. These casts were shaped in such a way to stretch his heel cords – which stretching would help keep him walking a little longer. However, just a few short months from this photo Mitch would go into catastrophic heart failure – and all that we tried to do to keep him healthy would become painfully irrelevant.

Ethan, knowing his younger brother’s options in life were limited, knew just how to serve him. He always allowed Mitch to wrestle him to the ground and let him win, even though Ethan was much stronger than his younger brother. He helped Mitch build blanket forts when his arms were weak. Sometimes Mitch would sit in the middle of the room with a smile as Ethan built a big pillowy, blankety fort around him. Mitchell’s smile would always grow in proportion to the size of the fort. Though life was difficult, it was also glorious.

Ethan found ways to serve Mitch so he could feel like a healthy child. Ironically, by allowing his older brother to serve him, Mitch was serving Ethan at the same time. When I think back on my own life, not once have I served someone and regretted the decision. In fact, I have always felt more blessed than the person I was trying to serve. Heaven’s paradoxes are as sweet as they are beautiful.

So, when I seem to struggle or get lost and can’t find my way, I stop to catch my breath … then find someone I can serve that day. It doesn’t take much to turn a bad day around – if I can help someone in need and my heart goes from lost, to suddenly found.

That’s the flipside of service: by allowing people to serve us, we are also serving them. The very act of giving can change or heal a heart … times ten.

HOLDING BROKEN THINGS TOGETHER

I remember this cold winter night when Natalie tucked our sweet boy in.  Mitch loved to be tucked away before he slept and the closer his tender little life came to the edge of the abyss, he seemed to want that comfort more and more.  I believe part of him, sensing time was short, was afraid of the night – for what if he didn’t wake?  Mitch didn’t want to die; in fact, he very much wanted to live.  Though his muscles were getting weaker and he was able to do less and less, he wanted to hang on to whatever life he could.  As I mentioned in an earlier post, he wasn’t a glass half empty/full person … he was just glad there was something in it.  For Mitch, even the smallest drop in his cup was cause for gratitude.  Oh that I could be a shadow of him.

The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped. That is how we hold our broken pieces together.
— Christopher M. Jones | Mitchell's Journey

After talking for a while, Natalie reached over to Mitch and they gave each other a warm embrace.  My heart swelled as I saw these two remarkable souls hold each other as if to say to each other, “I’ll hold your broken pieces.”  Natalie fought valiantly to keep Mitchell’s broken body together while his sweet soul seemed to hold her broken heart and keep it as one. 

There was never a night that little Mitch didn’t get this same hug from his mother.  She was his greatest comfort in life and he loved her so.  Though I tried to be there for my son in every way I knew how, there is simply no equal for a mother’s love.

This photo was taken January 12th, just a few days after we learned his heart was collapsing and that therapies were not working.  He was denied a heart transplant because he had a fatal disease and all we had left was precious time.  We didn’t know how much time – we just knew the end was coming.  Natalie and I cried every night under what felt like an ever blackening sky – for hope had faded like the evening sun.  In the darkness, fear of losing him loomed heavy like a thick fog and we didn’t know where to go or what to do.  We just knelt and prayed for help.

Two weeks later Mitch would be admitted to the ER for end-stage heart failure … and though we already felt broken, we were about to be broken further than we could imagine as we watched our boy slowly die.  Then came grief, which broke our brokenness even more.

My greatest heartache in life was then, and remains today, knowing that we couldn’t save him.  That is a grief of another sort … a grief added to his death.  A grief twice.

Since Mitchell’s passing, Natalie and I have learned how to hold each other’s broken pieces together.  It isn’t always easy, especially when we feel like we’re falling apart ourselves – but we find a way to set aside our sorrows and be there for each other … and that is what makes the difference.  The heavenly paradox, I’ve discovered, is when we help others through their troubles we somehow find ourselves helped.  That is how we hold our broken pieces together.  Mitch was scared, yet he tried to comfort his mom anyway.  In return, he received great spiritual comfort.

I know that Mitch and my Father are holding some of my broken pieces together, pieces unknown to me.  I can sense heaven’s hand in my life – and for that I am grateful.  Though I carry great grief, I also carry gratitude for feelings of peace. 

 

                                                                                 

BITTER PILLS CAN BE BLESSINGS

Immediately after Mitchell’s diagnosis, he was put on a rigid dose of steroids. For reasons not completely understood by doctors, these steroids are known to keep these young boys ambulatory a little longer. The moment DMD children stop walking, they are introduced to a host of new troubles. So, keeping them on their feet as long as possible is important.

I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time.
— Christopher M. Jones | Mitchell's Journey

For the first few weeks I remember watching my sweet wife break into tears as little Mitch would spit the medicine out, not wanting to take them. “How do I help my child do this important thing?” she asked. It wouldn’t take long for tiny Mitch to accept his new reality and that taking medicine was part of life for him. 

I remember this moment so vividly. It was a warm summer morning and our kids were anxious to play in the back yard. Mitch sat on our kitchen counter and looked at his mommy, wanting only to make her happy. Such is the heart of a child. He swallowed a bitter pill with a smile and then dashed off to some childhood adventure. He didn’t know why he needed to do that unpleasant thing – he trusted his parents that it was helping him.

And that is how things went over the next few years. Little Mitch always trusting and obedient, Natalie ever faithful and true to her baby boy. Never have I witnessed a more beautiful relationship than between these two. Mitch wanted only to make his mommy proud, and Natalie wanted only to keep her child healthy and happy. That is the most beautiful yet agonizing thing about parenthood – the moment we have a child our happiness and fulfillment comes in and through our children. If that is how it works for mortals, I can only imagine how it feels to our Father.

Fast-forward a few short years, in what felt like the blink of an eye, I found myself trembling at the knees as my son was dying. Mitch wanted to live and desperately didn’t want to hurt his mother’s feelings. I remember just as vividly that quiet winter night when he clung to life by a tattered thread. I imagine he, at least in spirit, looked toward his mommy in this same way. Eyes filled with love … wanting only to make her happy. Such a vision in my mind breaks me on the inside.

I remember being awoken by an unseen influence. It was as real to me as anything I have ever known in mortality. I was in a deep sleep on the floor beside his bed – exhausted beyond measure – then suddenly I was wide awake. I had a distinct impression I needed to tuck Mitch in. I rose to my feet, then fell to my knees beside him. With one hand holding his and another on his forehead, I leaned in and whispered to Mitch that I was tucking him in, just as he liked it. I told him to not be afraid. I told him I knew he was tired and in need of rest – that he could go and we would be okay. I told my son how proud his mother and I were of him. I told Mitch that he was all we ever hoped he would be, and so much more.

Thirty minutes later, he was gone. I know he heard me. I know it. 

The death of my son has been the most bitter of pills to swallow. I have never known an agony of the soul such as this. Grief is a daily dose of sorrow that is bitter to the taste. Yet grief need not make us bitter, for I believe it has the power to make us better.

Since the passing of my son I have thought often about the bitter pills, we must swallow in life and the bitter cups from which we must sometimes drink. They are awful in the moment. Sometimes they are terrifying. But they are necessary if we are to grow. I have come to learn that bitter pills can be blessings. I can’t think of a hardship in my life that hasn’t been an agent of change and growth. Those bitter pills I’ve had to swallow in the past have helped me – sometimes immediately, but more often over time. I have discovered that with heaven’s help, the things which seemed to hurt me actually helped me. 

So, when I have moments of grief … when it seems I am choking on that bitter pill … I will follow my son’s example and trust my Father; I will have faith that my struggles are helping me be something I don’t yet have a mind to see.