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.

During this time of uncertainty, I've thought long and hard about life and what matters most.

Just tonight, as Natalie and I were visiting grocery stores trying to find some essentials for our family, we talked about our little Mitch and the risk the Coronavirus would have to his health and safety.

My little10-year old son would have been 17 by now, which means he'd likely be unable to lift his arms, susceptible to respiratory infections, and so much more. We then turned our minds to other families who care for children with DMD, and we said a prayer in our hearts for them. My eyes welled with tears for medically fragile families who fight for another day, another month, or another year with their children.

As we drove home, this video came to mind, and I thought I'd re-share it. I posted this a few years ago about our experience witnessing the solar eclipse. It was a profound moment - especially considering how something so infinitesimally small as our moon could make me feel even smaller. This experience enriched my perspective about life - and this video shares my thoughts to that end.

I still think about my little Mitch. Every single day. I carry him in my mind and heart - and the tears I shed for him have become lenses that bring what matters most into focus.

I hope this video helps someone struggling to take heart and find a measure of peace and purpose.

Without warning, an enormous clap of thunder exploded, and my boys and I jumped with fear. A dark storm was brewing, and the afternoon sky had become almost dark as night. The campfire we were just about to start would have to wait until the downpour passed. From the looks of it, it seemed the storm was going to linger a while as the cool mountain wind almost ushered us into our tent for protection.

Mitch squirmed into his sleeping back and wiggled around as if to snuggle deeply into the mound of soft things that surrounded him. I chuckled a little because I did the same thing when I was a boy, and at that moment, I remembered how fun it was to be young. I looked upon my boys with a touch of envy. Mitch pulled his hands behind his head, his face bearing a light mustache from chocolate milk, and began to smile softly. "We're safe and sound, right, Dad?" Mitch said with a mixture of confidence and concern. "You bet, Mitch. This is going to be a crazy camping adventure." Mitch smiled and said, "I know you'll keep us from floating away."

Within minutes, we could hear the occasional pitter-patter of raindrops on the tent. A few minutes later, a burst of raindrops assaulted the side of the tent as the wind began to pick up speed. Soon, we were in the middle of a torrential downpour. I worried if our tent was rated for an hurricane-like storm. Mitch nudged my arm and said, "Doesn't this remind you of Winnie the Pooh and the Blustery Day?" Mitch giggled as I peered nervously out the window, keeping an eye out for a flash flood.

We knew there might be bad weather, so our backup plan was to have a den party in the tent. So, I pulled out a portable DVD player, broke out some snacks, and pulled up our covers as the boys and I watched a movie under the thinly veiled safety of our tent.

I didn't sleep well that night. Aside from a few breaks in the early evening, the rain never really let up. So, I laid in the tent in a trance-like state – somewhere between sleep and wakefulness … sitting up every hour to make sure the boys were dry. By morning the kids were rested, and I was hammered.

Of all the moments in life, the ones I remember with great fondness and nostalgia aren't the time's things went perfectly. Instead, the moments I treasure most are when we struggled and found our way through a hard time. Don't get me wrong; perfect times are just that … perfect. I love and appreciate them for what they are; honey is honey. But the taste of lemonade is never so sweet as when you must work to make it so. Perhaps that's why hard times often end up becoming our best times, in the end.

This photo of Mitch reminds me that even in our difficulties, we can make the best of what we've got – and somehow, someway, we'll look back and be glad we lived the life we lived. In every struggle, there's a price to be paid; but in the end, that's what makes the sweetest lemonade.

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.