Posts tagged Duality of Grief
WATCHING LOVED ONES SUFFER
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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.

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.

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WEARY HEARTS  (Originally Posted in 2014)
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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.

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THE LAST BUTTON
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Some moments in life burn an image into your mind with permanent marker – and some experiences so hard to bare, 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 a title 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. It took years to learn how to put my broken 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. 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 for safe keeping. And when I can, I try to gather mine.

Maddeningly, some people are so focused on comparing grief they forget to simply honor it.
— Christopher M. Jones | Mitchell's Journey

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 closer to the truth at the same time. 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 more significant 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 pain is as unique to her as her relationship was with Mitch. Her love was beautiful, vast, and deep.

The last button. It seems in life the hardest thing is always the last thing: the final 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 just looking back on a squandered moment realizing, in retrospect, that was our last and wishing we were different.

Neal Maxwell, a man whose intellectual and spiritual insight I’ve long admired 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.

Among the many blessings I have received in this life, Mitch ranks my sweetest blessings. Every day when I button my own shirt as I get ready for work, I vow 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, myself.


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SOME THINGS ARE FOREVER

I had lunch with an old friend recently and he shared a sacred moment he had during a time of deep personal struggle. I grabbed a napkin and quickly wrote his words down. He said, “I wept because I knew it wouldn’t last.” I was struck by the haunting truth of those words. Indeed, moments never last. Health and youthful beauty fade, over time. Even life doesn’t last. If my son’s journey through life and death has taught me anything, it’s that virtually everything ends, in the end. At the same time, I’ve discovered some things are forever.

... life doesn’t need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.
— Christopher M. Jones | Mitchell's Journey

This photo was taken during my Camelot years. Life was kind and my cup was running over in so many ways. Even still, I was a conscientious photo-taker because in my heart, I knew deep down nothing would last – that everything was changing. I realized early that photos would become my time machine. My journal. My compass.

On this day, young Mitch and Ethan were walking out of a movie theater giggling about the movie they just saw. I couldn’t help but capture this brotherly moment. I loved listening to their young minds at work. They were so funny, and they reminded me the world can still be innocent and kind. At this point in his life, Mitch had enough muscle strength to walk to the car, which was parked nearby, but he couldn’t go much further than that.

The way Mitch walked seemed almost ordinary to the layperson; but to those who knew DMD, his way of walking was unmistakable … a kind of flashing neon sign signaling the biological catastrophe that was slowly unfolding in his body.

When I look at this image, I can almost hear my boys giggling. I’m grateful for photos like this because I get to go back in time … to moments like this. I get to say to myself, “I’m grateful my children happened.”

About a month ago I had a heartfelt conversation with Ethan, who is almost 19 years old. He looks nothing like does in this photo; his boyish features have all but faded and given way to the likeness of a grown man. Over the last few years, Ethan has grown into a stalwart soul who is deep, insightful, talented, kind-hearted, and in search of meaning and purpose. I am so proud of him – not because of what appears on the outside, but for what lives inside.

As we sat on the couch, he began opening his heart to me. I could tell he wanted to talk. I sensed grief was just beneath the surface of his soft smile. I asked him, “What’s on your mind, son?” Then, his eyes welled, his voice cracked – and the flood gates opened. He told me how much he missed Mitch – even after all these years. I was reminded of the tender bond these brothers shared. They were the best of friends – and that is a space I hold sacred and with a reverent heart.

While part of Ethan ached to have some do-overs with Mitch– more importantly, he wanted his life and future to matter. Deep down, he wanted to honor his brother’s short life by the way he lived his. Ethan’s emotions were a mixture of looking back, being present, and thinking about his future. Just as it should be.

As I listened to Ethan’s searching heart, I was reminded that some things are forever. The love between siblings can be one of them. I am sure during Ethan’s final hours, many years from now, long after I’m gone ... when old age has taken its toll, he will look back on his life and still remember his brother with fondness.

That is one thing I admire about Ethan; he’s not bitter that his brother was taken from him – but instead, he’s grateful their lives were woven together – even if only for a short season. He's discovered life doesn't need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.

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