Natalie helped tiny Mitch waddle to the edge of a puddle that hugged a gravel road. Mitch, like all young children, was entranced by water and wanted to splash in it, maybe throw a pebble or two and watch the ripples dance across the surface. Though he looked healthy, his legs and body were already weakened by the relentless muscle wasting of DMD and this sweet boy needed his mommy to keep him from falling over. With a tender love and patience, only a mother can know, Natalie held his tiny hand as he reached down to feel the cold water on his fingertips.
As I watched my sweet wife and tiny son, I remembered something Euripides once observed, “Oh, what a power is motherhood, possessing a potent spell. All women alike fight fiercely for a child.” Oh, how my dear wife fought fiercely for our child. She rose like a lion with wings of fire, her eyes broken, yet determined. So many times I felt dwarfed by two giants: Mitch and Natalie. I still stand deep in their shadow and will honor them all the days of my life.
It is something of a terrible irony that the very things we are tempted to dismiss in ordinary life and take for granted are the very things we are desperate to hold on to once our loved ones are gone.
I don’t speak only of the stark contrast between life and death; I speak of life and the passage of time. For, I have been startled how the phases of life can slip through our fingers unaware. I think back when Wyatt was a very young boy and how sophisticated he was in word and thought. I recorded a few of our late night conversations, which are priceless and comical – but I wish I would have recorded more. At the time, his cute voice and tender thoughts were familiar to me, even ordinary. It is so easy to think things will always be the way they are, but everything changes. Everything. Even now, my dear daughter, Laura-Ashley is going to graduate from high school a year early and go to college later this fall. It seems like yesterday she was my little girl with a plastic clip in her hair and a sippy cup under her arm, who wove fantastical stories with me in the vast expanse of our imagination. It feels like just yesterday. Time waits for no one.
So when I think back on this cool summer afternoon in the heart of Wyoming, my heart swells with gratitude because tiny Mitch was blessed with a mother who knew the value of a moment and never let a chance to experience life slip by. Natalie taught me to cling to moments, not digital distractions or things, so I look back on my life my heart will always sing.
I recognize that much of this blog is focused on Mitch and my reflections on life because him. I think clinging to memories is what so many on the other side of grief don’t understand; some wonder why we want to talk about our lost ones, not realizing what we had is all we have left. We don’t get to make new memories … all we have is what we’ve done. Sometimes we talk because we’re afraid of forgetting. Other times we just need to cry. Still, other times we’re trying to make sense of a nightmare known only to those who walk in such darkness. We cling to our memories, both good and bad, because in the end, that’s all we have.
When I cling to this gentle memory of Natalie and my tiny son, it reminds me to put my phone down and splash while I can – because everything changes. Everything goes away, eventually.
It was a hot summer afternoon at grandma’s house when Mitch reached into his backpack with a subtle, almost mischievous smile, then retrieved my swimsuit. He knew I always forgot to bring my trunks so he went into my bedroom and packed them for me. “Dad, here’s your swimsuit.” Then, with a soft voice, he said, “Will you swim with me?” I chuckled briefly and then, quite unexpectedly, my heart melted as I saw my son’s tender face that seemed to say, “Dad, I don’t have much time.” Then, a lump filled my throat as I thought of the many times he wanted to swim with me and I came unprepared. In the most tender, almost apologetic tone I said, “Mitch, I would love to swim with you.”
We spent the better half of the afternoon playing “Super Shark” and a handful of other games we made up over the years. It was a tender time and a memory I hold dear to my broken heart.
I didn’t know how to be a dad – and I always felt like I was making things up and stumbling more than making good strides. My youth was complicated and I never had a day-to-day role model to emulate – so I didn’t really know what real fatherhood looked like. My biological father was a good, loving man but I only saw him for a month during the summer. The man I grew up with was angry at the world and especially angry with me, for some reason. My dad taught me how to love, but my drunken step-father (at the time), taught me how it felt to be isolated and despised. I learned to flinch, not flex and grow in confidence.
Because I felt the deep pain of rejection as a child, I never wanted my children to feel any part of what I experienced, so I did my best to give them what I wished I had. Sometimes I wonder if little Mitch wanted to swim with me because he knew I would scoop him up in my arms and hug and kiss him, all the time.
So there I was splashing around in the pool with my son. By this time, I knew Mitchell’s heart was failing him and it had only been a few months since we learned his heart function was on a steep and unexpected decline. Not a day passed that I didn’t wonder and worry if we were doing enough. We consulted with his doctors and tried medicines that were thought to stabilize his rapid heart decline. Everything failed. We did all that we knew to do and yet we couldn’t save him. When I look back on that labyrinth of decisions with unknowable outcomes, I am tempted to feel regret.
A few weeks ago, Natalie and I were asked to share some of our thoughts to a group of parents who have children with the same disease Mitch had: Duchenne Muscular Dystrophy. One of the panel questions was about making decisions and how to keep from looking back and wondering if they should have done something different. I appreciated that question because I understood it on a very personal level.
“No matter what you do in life, you’re going to make mistakes and regret is inevitable. That is part of being human.”
My response was “No matter what you do in life, you’re going to make mistakes and regret is inevitable. That is part of being human.” I suggested, “Perhaps we’re better served if we worry less about life’s inevitable regrets and spend our energy doing things that will limit the depth and severity of regret.” I believe if we spend time and energy focusing on the things we truly value, we will stumble, but we won’t stumble far. Our regrets are more likely to feel like bruises, rather than broken legs.
I mentioned in an earlier post that my son’s journey has taught me to turn regret into resolve. I discovered that regret is inevitable, but resolve is a choice.
Do I have regrets? I have a million of them. But, I have a million more resolves.
As long as I am human I will experience regret; the best way to live with them, as far as I can tell, is to know what I value and always do my best. That is how I've learned to live with inevitable regrets.
“Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. ”
It was a hot, muggy and vaguely miserable summer-like afternoon. We were at a family reunion/vacation far from home. The days were long, and there was a lot of travelling and waiting in the heat. Even the shade of trees didn’t offer much comfort from the suffocating humidity. It was easy to feel miserable.
Mitch could tell Ethan was getting worn out by the heat, so he called out to his older brother, “Effie, come over here. I’ll give you a ride.” Ethan smiled with relief and ran to his little brother who wanted only to serve him. With a childlike thump, Ethan plopped his bum on the seat, and Mitch powered up his scooter. Just then, mischievous Mitch turned to his brother and began to blow on his face. “There, are you cool now?” Ethan grimaced, and they both began to laugh and laugh. Mitch never missed an opportunity to laugh or make any heavy situation seem light.
There is a layer to little Mitch I don’t often write about, and that is his sense of humor. As Mitchell’s body grew from toddler to young boy, his mind and soul began to grow in unexpected ways. On more than a thousand-and-one occasions, I was startled by his intelligence, deep insight or brilliant humor. I admired him and often said to myself, “Who are you, really?” I sensed a greatness in him that was just beneath the surface of that otherwise quiet little boy … I sensed an old soul slowly awakening and that he had a very special purpose on this earth.
As I look at this photo, and many like them, I remember how often Mitch taught me the importance of laughing whenever you can. To this day, some of the funny things he did years ago still make me giggle – and my soul smiles. How I love that little boy. How I miss him.
At the time of this photo, Mitch was becoming noticeably weaker as compared to the rest of his friends. While they ran at top speed, he stumbled and could hardly walk the distance of a basketball court without his legs almost giving out beneath him. While they jumped, he fell to the ground. The world was closing in on little Mitch, and there was no escape from the muscle wasting that was slowly taking his life away from him.
Life for Mitch was a lot like this hot summer day; it would have been easy to feel miserable.
What I love about this ordinary image is how it captured his resolve for joy. Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it.
Oh, what a difference it makes to treasure what we have instead of measure what we don’t.
Mitch taught me that when I find gratitude in what I have, joy follows. And where there is joy, there is laughter.
We're imperfect and we struggle, but we have each other and that's enough ... and more. Missing little Mitch, though.