WHO CARRIES WHOM?

It was mid-November and we were enjoying a mild evening at a park just across the street from the apartments where we temporarily lived.  Like many times before, Mitch sat on my shoulders and tried to twist my hat as though it were a steering wheel.  He would laugh and laugh as I walked in whatever direction he tried to turn my head.  He thought pulling a tuft of my hair was like hoking a horn because I would yell “Ouch!” every time.  It hurt, but I didn’t mind because I loved to hear him laugh. 

Looking back, I was never carrying Mitch – I think heaven sent Mitch to carry me. This little boy was a tattered angel who was marked for a short life – heaven knew it long before he was born. And I sensed it the moment I first laid eyes on him. Perhaps, among other things, his mission was to save me from me.
— Christopher M. Jones | Mitchell's Journey

As Mitch sat on my shoulders, he didn’t understand the terrible future that awaited him.  Tiny Mitch didn’t know we had just sold our home because of him – so we could find a place that would accommodate his future needs.  He didn’t know that we would have sold all that we owned to keep him safe and healthy.  Mitch didn’t know much, for he was young; he just knew we loved him – and that was all he needed to know.   

For almost 11 years, we carried Mitch on our shoulders and backs and always in our hearts.  One might think it was a terrible burden to have a child with a fatal disease … a disease that would not only kill him, but would slowly take every part of him away.  Certainly, carrying a muscle-wasting, fatal disease on our shoulders was a burden.  But carrying our child with that hardship was also filled with blessings – and the blessings far outweighed the burdens; for when it comes to our children, no burden is too great. 

The night Mitch passed away he couldn’t open his eyes, but he could squeeze our hands to tell us he was listening.  I wonder what crossed his mind that night.  I remember whispering to him as I wet his pillow with my tears … I whispered memories I had with him and told him how grateful I was to be his daddy.  I hope memories like this photo crossed his mind and gave his weary soul comfort.  I hope he found peace knowing we loved him and were proud of the young boy that he had become.

I did my best to carry Mitch on my shoulders.  Not just physically, but emotionally and spiritually.  In strictly mortal terms, he was younger than me. Though spiritually, I began to sense his soul was much older than mine.  I thought I was on earth to carry him and help him learn and grow – but as heavenly paradoxes go, the opposite was true.  He was teaching and shaping me.  Looking back, I was never carrying Mitch – I think heaven sent Mitch to carry me.  This little boy was a tattered angel who was marked for a short life – heaven knew it long before he was born.  And I sensed it the moment I first laid eyes on him.  Perhaps, among other things, his mission was to save me from me.

Though he is gone now and my heart aches deeply because of it, I sense him from time-to-time.  Not through butterflies and rainbows, but a distinct spiritual impression his soul is near and that he is doing the work of angels … guiding me quietly through whispers that are felt more than heard.  I sense that he is tending to my broken soul – and I hope I am listening. 

Thanksgiving is near and I have a great many things to be thankful for: faith and family are chief among them. I am also grateful that hidden somewhere deep beneath life’s burdens are also blessings – blessings that are earned by-and-through struggle. And whenever I get confused and wonder what to do, I think about my Father and my son ... and I ask myself, "Who's carrying who?"

PEACE COMES FROM WHAT WE SEE

I knew time was short and midnight was near. Death was coming, and all I had was the moments that remained. How many moments left was impossible to know.

The ice upon which Mitch tread was terribly thin. His cardiologist said he was at risk of sudden death; so not a moment passed that I didn’t worry that very second might be my last. When I peered into my tender son’s eyes, all I could hear was the cracking of the ice beneath him.

“Dad, will you watch a movie with me?” Mitch said softly. Swallowing the lump in my throat, I replied, “I would love to, son.” Mitch grabbed his tiny puppy and whispered, “We can put Marlie between us and both cuddle with her.”

I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.
— Christopher M. Jones | Mitchell's Journey

Oh, we cuddled that night. We cuddled like we were the last two people on earth, bracing for a meteor to wipe us out. As Mitch snuggled into my chest, Marlie rested between us, ever faithful to her sick friend. Little Mitch was soon caught up in the movie … and as much as I wanted to enjoy the movie, I could not. All I could think about was the cracking ice and the deep, dark waters below. Tears streamed down my face, and my heart ached in ways I never imagined. I had never known such sorrow.

I remember saying a prayer in my heart in search of comfort, “Father, where is your hand in all of this suffering? Please, give me eyes to see. I have faith in you. I believe.” I learned years ago that “As soon as we learn the true relationship in which we stand toward God (namely, God is our Father, and we are His children), then at once prayer becomes natural and instinctive on our part.” And that, “Many of the so-called difficulties about prayer arise from forgetting this relationship.” The moment I discovered that truth, my prayers became more personal. More genuine. More effective.

The answers I was looking for didn’t come all at once. Peace would come and go like the ocean tide – and I was not spared from sorrow, neither was Mitch spared from death. But peace would come and give us a measure of rest. And when it came to having eyes to see, my eyes were opened, but slowly. Like mortal eyes, my spiritual eyes needed time to adjust – but soon I began to see tender mercies that I was previously blind to see.

I am no fanatic or a zealot, but there are some things I know, and I know them for sure. I know that despite our suffering in this life, we are never left alone … though we may be tempted to feel that way from time-to-time. God is never surprised or caught off-guard by the events that unfold in our lives. In fact, I’m convinced that Heaven walks before us and paves the way for tender mercies – so that we might find comfort in our hardships. But hardships are essential to our spiritual growth.

I believe one of our purposes in life isn’t to avoid pain and sorrow, but to grow stronger because of it. It would seem that life’s greatest virtues are born of struggle – not leisure. So, at least for me, I have learned to focus less on the pain and more on the purpose.

I miss this little boy. Though I would have done anything to keep Mitch with me, I have discovered things I did not previously see. The gift of sight, to see things right, is something I don’t take lightly. Peace, it seems, doesn’t come from things … it comes from what we see.

THE PEASANT & THE GLASS SLIPPER

I remember nervously asking Natalie to join me at a family reunion in Nevada. I was a college student, trying to figure out what I wanted to be when I grew up. I was just a goofy guy – a geek on every level. She worked in a law office and always intimidated me. In her mind, she quietly felt as though she lost her glass slipper, an intruder at the ball, and that she wasn’t anything special. To me, she was a princess, unaware – more beautiful and remarkable than she had eyes to see. How often I tried to say, “If you don’t believe your eyes, please believe me.”

So when she said yes to my invitation, I almost couldn’t believe it.

I remember the long six-hour drive to Mesquite, Nevada. I worried about boring her. I worried that if she discovered the real me … you know, the ordinary, flawed me … perhaps she would lose interest. On so many levels, I felt like an impostor; for I felt far less than what I might have seemed. But I set those self-doubts aside and trusted where my heart was leading me. All I could do was be me and hope for the best.

Nineteen years have passed and this humble princess who felt like a peasant has become, at least to me, the most beautiful and courageous person on earth. I remain, and will ever be, deep in her shadow. For her light shines brightly, so often helping me to see. Me, the true peasant, and she, royalty.
— Christopher Jones | Mitchell's Journey

I’ll never forget that long drive. We talked and laughed and before we knew it, the 6-hour drive felt like 30 minutes. At one point, our arms were resting on the center console and they almost touched … my heart nearly exploded. It was on this same trip Natalie and I sat at the edge of a swimming pool under a moonlit sky when I asked her if she would marry me. I didn’t have a ring in my pocket – I just had a lot of love in my heart and I wanted to give it all to her.

Somehow this extraordinary woman said yes to a most ordinary boy.

We started our lives together in humble circumstances. We lived in a dark, spider-ridden basement apartment. We had old furniture and used dishes, hand-me-down books, and thrift-store decorations. We were poor in things of the world – but we were rich in the things that mattered most. As I’ve grown up a little, I’ve discovered the material things we think we want in life often take us away from the things we need.

It wasn’t long before we started our family. Each child was a remarkable gift. Laura-Ashley, our first, was a precious little girl who was smart and sassy. She is almost 18 years old now, and she is still smart and sassy. Ethan soon followed; a loving and sincere boy who was as funny as he was creative. Then came Mitch, a quiet and docile child whose love was transcendent. He would capture our hearts, break them and put our faith to the test. Wyatt soon followed … an alert, passionate and loving boy who would become a ray of light during life’s darkest moments.

I had no idea that the girl who swept me off my feet and made my voice tremble and hands shake as a college student would soon become my soul mate and that our life journey would take us down such unexpected, soul-stretching paths. I wish I could say life went according to plan. To the contrary, our greatest nightmare became our waking reality. We’ve had wins and losses. We’ve endured famine and weathered terrible storms. During times of trouble, we clung to each other and held on the best we knew how.

Nineteen years have passed and this humble princess who felt like a peasant has become, at least to me, the most beautiful and courageous person on earth. I remain, and will ever be, deep in her shadow. For her light shines brightly, so often helping me to see. Me, the true peasant, and she, royalty.

When we’ve reached our golden age, when our lives are nearly done, I’ll look back and count my blessings and know that Natalie was the biggest one.

 

 

IN TIME

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.
— Christopher M. Jones | Mitchell's Journey

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.

THE TROUBLE WITH TIME

The trouble with time is we always seem to think we’ll have enough of it.
— Christopher M. Jones | Mitchell's Journey

The look of panic on my sweet wife’s face is forever etched into my mind. The time we feared most had come. Mitchell’s urine bore evidence of catastrophic organ failure, his vitals were on a steady decline and we didn’t know if we had days, hours or minutes left with our son. 

The drugs we administered to Mitch were both a blessing and a curse; a blessing because they kept him from suffering from the pain of organ failure and a curse because they kept his mind foggy and distant. We were blessed with the greatest hospice nurse to ever walk this earth. She was exactly what we needed during this dark time … a tender mercy for which I will thank Heaven the remainder of my days. She was there to guide and council us every step of the way – but because she didn’t live with us, we were left to face the majority of our time alone with our boy. That scared us.

Prior to hospice, all we knew was children’s Tylenol and sunscreen … then suddenly we were administering morphine and other powerful drugs to our child. All we wanted was to go back to the days of macaroni and cheese and band aids, scraped knees and children’s books. But that was not our lot in life.

I’ll never forget our first encounter with our hospice nurse. She was so kind and compassionate, yet strong and direct. She was immediately soothing to Natalie and me … parents who were fragile and frightened. This hospice nurse reminded us of what our DNR (Do Not Resuscitate) form meant. She told us that if Mitch was is in trouble that we were not to call the ambulance, perform CPR, or any procedure that would prevent death. Now that he was home on hospice, her job was to help our son’s transition to death happen comfortably. After this good nurse left that first day, I remember going to my bedroom, closing the door and falling to my knees. I wept and wept. I prayed like I have never prayed before. “Take me!” I pleaded with my Father, “Please, take me instead. I would endure any suffering if it would spare my son.”

After a period of deep, tearful grief, I found myself back on my feet again. With feeble knees, I tried to bear the burdens of my family on my shoulders – but I soon realized I could not take away my family’s suffering. I could only walk with them and love them and do all I could to support them. Though I wished to carry it all, I realized that was not the purpose of life and that we must all experience joys and sorrows on our own if our souls are to truly grow.

Though I tried to be strong for my family, this good woman, my dear wife, was the strongest among us. I will always honor her for her strength and wisdom during this impossible time. I stood then, and continue to stand today, deep in her shadow. 

So there we sat on the edge of the abyss, our son hanging by a pebble and slipping into the darkness. I sat on the edge of his bed in tears wondering how I could have been a better husband and father. I made plenty of mistakes and those mistakes weighed on my soul for a season. I wasn’t so upset with the occasions I might have been more patient with my children – for I knew we all make those mistakes and I always made things right with my kids. Instead I began to contemplate the time I wasted pursuing lesser, trivial things. I wanted to go back in time and invest that squandered time into my family. It wasn’t a lot – but enough to hurt. Enough to cause a little regret.

The trouble with time is we always seem to think we’ll have enough of it. It seems that only when we stand to lose everything do we find which things really matter. My family matters more to me than anything – and I have discovered how and where I spend my time matters just as much. 

THE LAST BUTTON

The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different.
— Christopher M. Jones | Mitchell's Journey

There are some moments in life that burn an image into your mind with permanent marker – and some experiences so hard to bear, they change the shape of your soul. This was one such moment that broke me and reshaped me in ways I'm still learning to understand. 

My dear wife was dressing Mitch at the funeral home. Our mothers were with us as well as our oldest sisters; each of whom played a precious and sacred role in Mitchell’s life and we wanted them to participate. Also, we were afraid of doing this alone.

Our once-little baby had grown into a beautiful, funny, thoughtful, and caring young boy; yet there he was laying quietly on a table – motionless and frighteningly cold to the touch. My sweet wife, along with these other good women, reverently dressed Mitch in preparation for his funeral - where we would honor the good little boy that he was. Natalie was doing okay until she got to the last button – then grief washed over her like tidal wave, thrashing her about on the inside. This was the last button she would ever fasten for our son – and that broke her heart. It broke mine, too.

I was a wreck that day. In fact, I was a wreck on the inside for many months afterward. Years, in fact. I think I've just begun putting my pieces back together again. Even still, I carry a father’s grief and it is a terrible burden. Yet as much as I hurt on the inside, I know my wife hurts in ways I cannot imagine - for I am a simple man. On the other hand, she carried him, gave birth to him and made sacrifices in ways only a mother can - and with that pain and sacrifice comes a love unique to that service and surrender. So, I consider her grief hallowed ground. I silence my own tears so that I might wipe hers and scoop up her shattered pieces. And when I can, I try to gather mine.

All too often I hear people suggest “there is nothing like a mother's love” – in a manner that seems to subordinate or dismiss the love of a father. In like manner, I hear less often the same of a father’s love as being more than anything else. It's almost as if they claim one love is greater than the other. Nothing could be further, yet at the same time closer, to the truth. They are correct in saying there is nothing like a mother’s love; in the same way there is nothing like a father's love. Both are different, both are beautiful and sacred in their own right. But to suggest one is greater or weightier than another ignores one immutable truth ... they are both parents and hurt deeply for the one they loved and lost. Maddeningly, some people are so focused on comparing grief they forget to simply honor it.

So when I look at this photo, I set aside my own sorrows and I reverence my wife’s. Her sorrow is as unique to her as her relationship was with Mitch. It was beautiful, vast and deep.

The last button. It seems in life the hardest thing is always the last thing: the last lap around the track – when your legs are about to collapse; the last conversation you will ever have with a loved one before they die; or simply looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different. 

Neal A. Maxwell, a man I greatly admire, once wrote, “We should certainly count our blessings, but we should also make our blessings count.” I love that statement because it reminds me of the importance of putting our blessings to good use - otherwise we are throwing our gifts away. 

Mitch ranks among the sweetest of the many blessings I have received in this life. I vow every day, when I button my own shirt as I ready for work, to remember the blessing Mitch was in my life. And most importantly, to make that blessing count … to allow this experience to become an agent of change for the better. This image, burned in my mind and heart, reminds me to make Mitchell’s last button count – if not for anyone else, then for myself.

NO EXIT*

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.