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.