When I listen to audio interviews I had with Mitch at the hospital and home on hospice, it’s clear to me now: he knew he was going to die. I already knew it but was trying to shield my son from fear. He knew it but was trying to keep my broken heart from falling apart. I wonder what we might have said to each other if we weren’t trying to save each other from sorrow. I wonder.

If I think too much about that, I fall apart. I have to let that go, though it is much easier said than done.

I’ve never known a child to love life with such a depth as Mitch. In the most curious ways, he was burdened by the kind of thoughts an adult might think, like, how he was going to afford a home, who he was going to marry, and the type of father Mitch wanted to be.

On one occasion, he asked me how mortgages work and said he was worried he wouldn’t make enough money. “My allowance is so small,” he said. I chuckled a moment, then swallowed a lump of compassion in my throat then said, “Oh, sweet boy, don’t worry about that stuff. It’ll all make sense in time. I don’t know how or why; I just know things seem to work out the way they’re supposed to.”

Mitch thought a moment, “But Dad, what if I can’t make it work?”

“I’ll always be with you, Mitch. You will never have to face life alone. I promise.”

With that, Mitch went back to building his Legos.

My son fascinated me, both by his purity and maturity. He drank in sunrises and sunsets like an old man wise in years and rich with experience. He understood that each sunset was unique, never to be repeated in all the earth. Because Mitch thought of his mortality often, I think part of him wondered if the beautiful sky he so admired at any moment might be his last. On the deepest level, he knew life was fragile and precious above all things.

So when I saw my son at the hospital struggling to feel good and doctors grappling with how to save his life, my heart sank below anything I’d ever experienced, then or now. The days at the hospital were long and the nights unbearable. Sometimes I wonder if he awoke in the middle of the night and heard me quietly weep in the dark corner of the ICU room.

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I remember running to get something from my car at the hospital, near the time I took this photo. The sunset was almost past, so I quickly captured it with my iPhone to show Mitch. When I returned to his room and showed him the picture, he said, “Was that today?” (see the next image in this post)

I could tell by the tone in his voice he yearned to see it with his own eyes. I could tell he wanted to leave the hospital and never return.

“Yes, son. You’ll get to see them again soon.”

My heart is glad knowing Mitch saw a few more sunrises and sunsets before his time was up. He treasured each of them.

I don’t know why we must watch loved ones suffer. I wish I could take it all away. I wish I had the healer's art.

Instead, I carry grief like an inoperable brain tumor. It isn't terminal, though sometimes it feels that way. But it does change my vision; as a result, I see the world differently, more clearly and compassionately.

I don’t suffer in grief like I used to, but tonight the gravity of grief is heavy. Tonight I walk on Jupiter and struggle a bit to breathe. That is the lifelong burden of losing a child.

While I continue to make sense of suffering, I don’t shake my fist at heaven, angry that I lost my son. Instead, I have a heart of gratitude to have been his father. I got to know a little boy who became my deepest teacher. I got to meet an angel made mortal, whose life forever touched mine.

The days were long, but the nights were even longer. With the prospect of days to live, weeks if Mitch was lucky, we did our best to keep our chins up and held our tears at bay for times he was napping. Sometimes we had to excuse ourselves from the room and walk down the long half-lit hospital halls and weep because we couldn't contain our sorrow any longer. 

To Mitch, we were the strong parents he knew, ever filled with answers, healing balms, and love. But on the inside, we were frightened children ourselves, worried over what tomorrow might bring. 

We were terrified by the invisible monster that wasn't under his bed but in it.

The doctors had stabilized Mitch with Milrinone, a drug that helped his weary heart find rest. After a few days, they wanted to see if Mitch could be weaned from the drug. It would take a little over an hour before the effects of being taken off the drug made manifest. We simply had to wait and see.

Just as the doctors took Mitch off Milrinone, my mother and children came to visit – which was a welcomed distraction. She sat on what appeared to be a rolling chair. If you weren't paying attention, you wouldn't notice it was, in fact, a portable toilet. As we sat and talked for a while, Mitch started to sing a line from a popular YouTube video at the time "Sittin On Tha Toilet" – which song he loved to laugh at and sing. We instantly burst into giggles because of the way sweet Mitch was drawing attention to his grandma. He was so observant, so very funny. For the next hour, Mitch was smiling, and we played word games and laughed together. 

We had just taken a bedside family photo (seen in an earlier post, OUR SEARCH OF HAPPINESS). Mitchell's sense of humor was in full bloom, and I was startled by his intelligence and his renewed sense of comedy. We enjoyed a moment of pure bliss – the stuff rich lives are made of.

Mitch was off the drug and seemed to be doing fine. Could it be? Perhaps this was a glimmer of hope; maybe the doctors had it all wrong … maybe they made a mistake, and his heart wasn't failing after all. For a moment, we wondered if a catastrophe had been avoided … that perhaps we could resume life as usual as an invisible family who just wanted to be together. 

Then, in the blink of an eye, something changed, and it seemed as if a dark cloud rolled between us and the brittle bliss, we knew moments earlier. Mitchell's countenance changed, and tears filled his eyes. To lift his spirits, Laura-Ashley handed him a cupcake she earlier made for her little brother. Mitch wanted nothing to do with food. It was clear he was crashing and getting very sick in a big hurry. We immediately told the doctors to resume the medicine so our boy would feel better. Our hopes for the future were dashed. 

Suddenly I saw with horrifying clarity the pebble upon which Mitchell's life clung. The abyss that was inching to devour our son finally had its mouth gaping wide open and roaring swallow him whole. I fought back the tears as I saw my little boy suffer. Inside I was a little boy, too.  I was helpless to save him and desperate to trade places if I could.

Two days later, we would make our final journey home so Mitch could live out the remainder of his days in the comfort of his own room and in the arms of our love. Soon, Mitchell's weary valiant heart would grow fainter until it suddenly stopped. And we would find ourselves with weary hearts of another kind. Over the coming months and year, our hearts, which carried the burden of grief and sorrow, became wearier still.

I suppose it's only human to wonder why a little boy who was so innocent and pure was made to suffer and die. Might it have been better he lived a full life and do much good in the world? What does God or the Universe have in mind? What does He see that I do not? Surely I cannot comprehend the infinite with my finite mind – but I have a spiritual assurance that transcends mortal experience. Still, others blame God for their sorrows and turn their already weary hearts away from the very thing that can truly give us rest. 

At least for me, I have come to realize it is more productive to stop asking "why"… to dispense with the idea that I am entitled to a life free of sorrows as if I should be the world's only exception. Rather I ask, "what am I to learn from this?" Perhaps when I lack insight, it's because I'm not asking the right questions, or I'm not listening. The invitation to us mere mortals is to seek, and we shall find - to knock and doors will be opened to us. But we must do the seeking; we must do the knocking. 

Spiritual assurances aside, my heart remains weary with sorrow. I miss my little boy … I see his empty bed and little shoes, and I weep. Though I know Mitch is in that place beyond the hills, I want him here with me … in my living room and within my loving embrace. Grief is such an inferior word. 

My heart is weary with sorrow, my soul in need of rest. Though I stumble over pebbles, each day, I do my best. While I travel Mitchell's Journey, without him by my side, I can see the path now, I can see with Heaven's eyes.

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

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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.

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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.