THE INVISIBLE STRING

For Valentines Day, I wanted to share another video of Mitch from the Letters to My Son series. When we took Mitch home from the hospital he wanted to share a message with our family about love - a fitting topic for this time of year.

There was a tender irony in the timing of things. His heart was failing during a holiday that celebrated matters of the heart. Though his physical heart was weak, the heart of his soul was strong. He was the giant, and me ... very much the child.

In this video, you'll see Mitch tenderly listening to a book he asked his mother read. I believe Mitch wanted us to remember its message, long after he would pass away. And in this story is a message within a message.

I'm just a regular dad who struggles to be the best he can be. I have a long way to go - yet, however much I stumble, I can feel an invisible string that connects Mitch and me.   

Here is the transcript of the video:

Dear Mitch,

I had a dream about you last night and I awoke in a panic.  In my efforts to replace my thoughts of anguish with something of peace, I remembered something about you – and it calmed my weary heart.

When it was time for you to leave the hospital, you couldn't get out of there fast enough.  You were anxious to be a little boy again and to put the labor of medicine behind you. Your mother pushed you in a wheelchair to the curb and gently helped you get seated in the car.

As we were about to leave, you said, "Mom, isn't it my turn to teach family night?" Our hearts swelled and broke at the same time – you see, you were less concerned about playing with friends and toys and more about sharing something that was on your mind and heart.

You had a lesson in mind and you wanted to share it us – and it is a lesson we’ll never forget.

Your mother said, "Yes, Mitch, it's your turn.  Do you really want to teach a lesson for family night??"  You nodded your head and said “Yes, mom.  I have it all planned out.”  With that, it was settled – you were going to share a lesson with us and we were excited to learn from you. 

What followed is best described as the longest drive of my life.  We were on a one-way trip.  There would be no more doctors, no more hospital visits to keep you healthy.  Our job was to usher you to the other side of the veil.  I worried whether we did enough to teach you – but it was realizing it was you who was here to teach me.

The next day you awoke, and you began preparations for family night.  You chose a few books to read and prepared some important talking points about what it means to love.

You asked your mother to read the books - which she did ... like she did every night.  I think you would have read them just fine, but I think you wanted her to read them so it would start to feel life was getting back to normal.

The first book you chose was called, The Invisible String … a story about a string of love you cannot see with your eyes, but you can feel with your heart.

Like that beautiful author described, there is an invisible string between you and me.  It tugs at me daily.

The look on your face said all that needed to be said.  You were listening so close to the message of the story – a story about love and the bonds that tie us together.

I couldn’t help but notice you breathing hard because your heart was weak.  A friend of mine observed, after you passed, that it was ironic that a child whose heart was broken could teach so much about love.  You loved that story because it spoke the thoughts and feelings of your heart – that no matter where we go on earth or in heaven, there will always be an invisible string that connects us.

That book will forever be treasured by our family – for as long as we live.  For like the author wrote, there is an invisible string and we will always be connected.  Looking back I wonder if that was one of the messages you wanted us to know before you left us.

You’re gone now … far from view.  But I can still feel that string tug at my heart – and it will always tug at me – for as long as I shall live.  That is the magic children have on their parents.  Now, and forever.

Love,

Dad

 


This video essay is part of a series entitled, Letters to My Son.  You can see other letters from this series by clicking the button below.

HOW THINGS CHANGE

A few years ago, I wrote a story entitled, “It’s Okay, You’re Safe With Me.” I reflected on a time we took our kids to an amusement park to take our minds off the harsh realities of our son’s fatal diagnosis. At the time, tiny Mitch clung to my hands as we sat in a small pirate ship that swung back and forth like a gentle pendulum. It was the mildest of rides, but to little Mitch, it was thrilling.

Among the agents of change, there’s the passage of time, however fast or slow. Then, alas, there’s the furnace of affliction – and it’s in our damage that we truly grow.
— Christopher M. Jones | Mitchell's Journey

A few years passed and we visited that same theme park. Within eyeshot of the kiddie pirate ship towered a much larger pirate ship – this one designed for adults. This ride, too, swung back and forth like a giant pendulum; only the back-and-forth was on a much grander, vertical scale. In fact, that ride always had me somewhere in the middle of trying to catch my breath amid butterflies and wanting to take a nap from being rocked to sleep.

On this day, a much older Mitch sat next to me. When he was tiny, he had to hold on to almost every part of my body to feel safe. By this age, sitting next to me was enough. I thought to myself, “My, how things change.” I was so proud of this little boy and all that he was becoming.

So, as the ride began, Mitch tightly grabbed the bar in front of him and smiled. “This is so much fun, Dad,” he said with a smile. Not only was Mitch older and unafraid, but he had also grown an appetite for the rush and thrill of roller coasters.

Quietly, I admired him. My little boy learned to face his fears in his youth in ways I wished I could as an adult. Despite being young in years and physically weak, Mitch was dauntless. Like most young boys, there was part of Mitch that wanted to be like his dad. If only he knew how much more I wanted to be like him.

A few short years would pass from the moment of this photo, and things would change even more. I’d find myself kneeling at my son’s bed as he neared death. Whatever bravery he demonstrated earlier in his life, none compared to the bravery he had then.  Not only was the loss of my son about to change my world, I was changing on the inside, too.

Just today I read a post from Jackie, a friend of mine, who was reflecting on a great difficulty she’s endured. She quoted a friend and mentor who once told her, “I hope we make our pain worthwhile.” I loved that sentiment – because we’re all going to get hurt in life, so we may as well grow instead of gripe.

That isn’t to say we become flippant or callous toward the suffering of others. In fact, there is a certain sacredness to suffering. I’ve discovered that suffering has drawn me closer to God than any sermon I have heard. At the same time, I reverence the suffering of others because I know what it’s like to tremble in the dark – looking for hope or the faintest spark.

Japanese writer Haruki Murakami observed of suffering, “Once the storm is over, you won’t remember how you made it through, how you managed to survive. You won’t even be sure, whether the storm is really over. But one thing is certain. When you come out of the storm, you won’t be the same person who walked in.”

Yes. Life has an interesting way of changing us. I don’t believe we’re meant to stay the same. Instead, we are [spiritually] designed to change and grow. Among the agents of change, there’s the passage of time, however fast or slow. Then, alas, there’s the furnace of affliction – and it's in our damage that we truly grow.

I SEARCH FOR WORDS, YET THERE ARE NONE

 “Dad, will you open the blinds so I can look out the window?” Mitch said softly as he sat up on his bed.   

Reverently, I lifted the blinds so Mitch could look out the window unobstructed.  I was quiet about it, too, for this was a sacred time when death was near, and the veil was thin.  It was a cold, wintery day and snow covered everything.  The light of late afternoon had become soft and warm as if to compensate for winter’s chill. 

The end was coming; man and medicine were powerless to stop it.

Mitch looked out the window in silence.  At that moment, his countenance changed from that of a young boy to one of an old soul emerging.  I asked him what he was thinking, and he shook his head as if to say, “Not now, Dad.”  Mitch then said, “I’ll tell you later.” 

He knew he was going to die, but he didn’t know he only had a few days left.  None of us did.

I watched my son in silence – respecting his need for space.  I searched for words, but there was none.  I wanted to hold him tight, help him feel safe, and tell him all would be okay.  But things weren’t safe, and he wasn’t going to be okay.  The end was coming; man and medicine were powerless to stop it.

I said a prayer in my heart, “Oh, Father, please … I’ll pay any price.  Can I take his place?”  I guess that was my way of bargaining – and I did it a million times a day.  With all my prayers, I knew that none of us could escape death – nor can we escape hardship.  I understood that it rains on the just and the unjust and we must learn to bear our burdens patiently.  I understood the wisdom of an old Jewish proverb, “Don’t pray for lighter burdens, pray for a stronger back.”  Although I always prayed for a way out - I also said, “But if not, please help us carry this burden.”

Little Mitch never told me what he was thinking that day.

This sweet boy lived out his remaining days as gently as he came into the world.  As death was gnawing and gashing at our door, Mitch surrendered his soul to God with the faith of a child and the heart of an angel.  He was a giant among men, and I was then, and remain today, deep in his shadow; for I am less than a shadow of a man.

In my darkest moments, I searched for words and found none; until I learned to quiet my mind and heart so I could see all that God had done.   It was then and only then I found gratitude in the midst of grief

One day, when I go to that place beyond the hills, I will thank my Father for loaning Mitch to me.  My son, my brother, my teacher – a gift burdened by adversity who taught me how to see. 

WHAT A DYING BOY TAUGHT HIS DAD *

We had just finished his early birthday. Mitch was grateful to have a few of his close friends over to celebrate his life. To my knowledge, none of the boys knew Mitch was dying, they just knew he was sick and we were celebrating his life a little early. If they did know, they kept it a secret so as not to frighten Mitch. Natalie and I carefully revealed his circumstance over time, but we wanted him to be a little boy just a while longer. That was our present to him.

I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.
— Christopher M. Jones | Mitchell's Journey

At this moment, Mitch still had every reason to be discouraged. He knew his heart was failing and that no matter what, his life would change as he knew it. Despite his fears, he set his troubles aside and found joy in that moment. He knew he was in trouble, but he was just happy to be alive. There was so much joy in his heart that night. No longer tethered by a million beeping machines, Mitch was free … save the PICC line that entered his right arm and pumped medicine directly into his heart.

As I tucked him in that night, Mitch whispered, “Dad, I had the best day today.”   My heart nearly burst with a mixture of grief and gratitude.

Mitch taught me in this moment that there are still reasons to be glad, no matter what is before us. Though my family, darkness gathered around us, we had moments of sheer, almost heavenly joy. We were afraid but glad for the moments we had.

Mitch reminds me of a saying I stumbled into not long ago: “Don’t be so cool you can’t cry. Don’t be so smart you can’t wonder. Don’t’ be so set on your sunny days that you can’t roll with the thunder.” In so many ways, that saying described Mitch.

Now, there are times for joy – and this was one of them. My heart is glad every time I see this image. But sometimes the thunder rolls so hard it breaks us. There are sacred moments of immense suffering – the likes of which those who do not experience it themselves, can simply not imagine. It wouldn’t be long before the smiles and laughter that once graced the walls of our home turned to ash and a river of tears soaked the floor. There was real suffering in our home – and in truth, there remains a measure of suffering today. Grief is the work of a lifetime, and that’s okay.

Though I must continue this hard work of grieving and healing, I will always be real and acknowledge the sad, then look beyond and find a reason to be glad. That is what a dying boy taught his dad.

 

A few more thoughts:

One of the defining characteristics of Mitch was his ability to adapt.  Though Mitchell's muscles were weak at this time and he couldn't throw a regular ball for very long, he decided in this moment to play dodge ball with balloons.  Mitch laughed and laughed as he pounced each balloon toward his opponent.

This night, Mitch wasn't sad he wasn't strong like other kids, he was just glad he had any strength at all.

One more thing ... the shirt he was wearing bore the words, "Watch Me Win."  It was given to him as a gift when he returned home from the hospital.  Loving friends in our neighborhood wanted to give him a boost of confidence.  Mitch loved this shirt - both for the design and the message it conveyed.

Though Mitch lost his life, he won the more important fight.  By the very way he lived his life, he won the greater prize.

 

LIFTING HEAVY HANDS *

Photo Credit: Scott Winterton

Mitch was barely home on hospice. The hourglass that counted down our precious days and hours was all but invisible, and we didn’t know if his little heart would give out in 5 days or 5 minutes. So we clung to each moment like a weary traveler might hang to a flask of water in a desert.

I love that heavenly paradox: when we lift others, we too are lifted.
— Christopher M. Jones | Mitchell's Journey

During this time, Candice Madsen, a producer with a local news agency (KSL), had been telling our son’s story on the news. She was professional and courteous … and most importantly, she was deeply compassionate. At one point, she sent me a message asking if a former BYU football player, Andrew Rich, might come over to wish Mitch well. During the height of his athletic career Andrew thought football was the most important thing in his life, but then he had a baby and, like me, his world turned upside down and right side up. When he learned of our little boy’s struggle, his heart turned to our son with compassion.

So, on this cold February night, Andrew brought the warmth of humanity into our home. He sat on the edge of our couch, next to Mitch, and shared a few photos of his little baby who also had heart complications as an infant. Then Andrew did what great humans do, he turned attention away from himself and encouraged a person in need. He told little Mitch how strong he was and that he cared. I sat on the couch and fought back a river of tears as I knew Mitch needed every ounce of courage and strength he could get. In truth, so did we.

After a while of conversation, Mitchell’s energy began to fade, and he asked to lay down. Natalie rushed over and scooped our little boy in her arms; his hands seemed so heavy. Just then, Andrew reached out and held Mitchell’s hand and squeezed it – as if to give him a hug. I saw a look of compassion and love in his countenance that warmed my heart.

Mitch was touched by his kindness and wondered why anyone, especially a stranger to him, would even care. He often said things like, “I’m just a kid,” struggling to understand. Later that night I sat on the edge of his bed as Mitch asked me why so many strangers took an interest in him. My eyes filled with tears as I explained that people care because they know how precious children are. Then, I could barely utter the words as Mitchell’s eyes filled with tears, “You, my son, are the very best part of me and I want to be good, just like you.” Mitch reached out his tired arms gesturing for a hug. We both wept, father and son, as we held each other – trying to lift each other’s heavy hands.

Mitch would have another good week ahead of him. He played with friends, spent time with family, and got to do many things he loved. I put my entire world on pause and tried to love this little boy with everything I had. It was a tender and fragile time: both beautiful and heartbreaking.

After that magical week, death came clawing at our door. Another week would pass, and Mitchell’s vitals would deteriorate as we felt death’s coldness breeze seeping into our home. Saying goodbye was terrifying beyond all description and broke every single part of me. Then came grief – a journey that would break my broken pieces.

I have spent the better part of 3 years processing the death of my child. I still grieve deeply, though writing has become my therapy and helped me process the meaning of things. Yet, in moments of deep grief, when my hands (and heart) feel especially heavy, I have learned to turn my attention to others, and I try to lift heavy hands, just like Andrew Rich. I love that heavenly paradox: when we lift others, we too are lifted.

May we spend this year in the service of others, lifting heavy hands; for we are all weary travelers and we are meant to help each other along the way.


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. 

 

                                                                                 

WHEN TIME RUNS OUT

I don’t think children understand how often we worry over their wellbeing, how much we pray for their safety, and how we want of their happiness. For over a decade, I knelt by my son’s bed every single night and prayed while he slept. I prayed that Mitch might somehow escape DMD, that his life might be spared. For a season, my prayers felt answered to some degree, because he often seemed healthier and more mobile than he should have been. I am thankful to my Father for that.

On this night, I sat at the head of Mitchell’s bed as my young son leaned into my chest, struggling to breathe. I put my arms around him and held him close so he would feel safe. But Mitch was not safe. He was scared and I was, too. But I knew Mitch enough to know that if I held him, he would feel comforted. Sometimes, in life’s storms, all we can do is comfort each other.

Neither of us knew he had 48 hours left.

Like a baby made of sand, he would slip through my fingers and pass away – and my soul would break into unfathomable pieces.

I’m not sure why people wait to make important changes until time runs out – but it seems to be more common, than not. Mitch taught me to never take for granted the time we have – because it is always later than we think. Even though I did all that I knew to do, when it came to making moments, I wish I would have done better. I don’t live in regret because my mistakes and missed opportunities only motivate to do better and try harder. I am satisfied that I did my best while remembering I can always do better.

Lately, as many have noticed, I haven’t posted many new stories of Mitch; that is because I’ve had to turn my attention to something I helped put in motion before he passed away … something I risked everything to make happen, because of him. Now, I do it in honor of him. About a year before Mitch passed I was asked to help develop an idea that would help people live what they valued and make the most of their life. I didn’t know I was about to lose my son, and my plate was already filled to overflowing; I wasn’t looking for anything new. But when I saw what this new idea could do for people, I sensed it was part of my life mission. 

Aside from my faith and family, I care deeply about two things in life: Mitchell’s Journey and helping people live their core values so they can lead a meaningful life. That is who I am. Because of Mitch, that is who I have become – and I cannot put it down. 

Many have asked what I do for a living, and to those I haven’t been able to respond to … I run a company whose mission is to help people close the gap between what they value and what they do. It’s about making our lives matter before time runs out. 

You can visit www.mycore.com to learn more about that effort … an effort that is designed to help people. Period. It is a software tool that helps people organize their lives and stay focused on their core values. When Mitch was alive, he would sometimes come to the office with me when we were just starting this company. He even said what we were building was “really cool.” In a strange way, maybe part of this company is a legacy of my son. He often asked questions about how it would help people, and each time I would share something he would say, “I’m glad it will help others.” I wish he could see how far it has come – and what it has the potential to do for others.

At the end of the day, it is later than we think. Whether our children are about to grow up and grow out of our homes, or if we’re going to lose them to sickness and death … we don’t have much time. Everything changes quickly and what matters most is making the most of what time we have – and that is what I try to do at Mitchell’s Journey and mycore. Both are deeply woven into my life mission – I do both because of Mitch.