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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.”

— Christopher M. Jones | Mitchell's Journey

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.

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“Mitch never saw his glass half empty, nor did he see it half full. He was just grateful there was something in it. ”

— Christopher M. Jones | Mitchell's Journey

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.

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“... there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other. ”

— Christopher M. Jones Mitchell's Journey

Mitchell’s neurologist, the same doctor who diagnosed him at the age of 3, came to the Cardiac Intensive Care Unit to say hello to our son. Except, she wasn’t really coming to say hello; she came to say goodbye – for she learned Mitch had end-stage heart failure and cardiologists thought he had days to live. 

This good doctor had a reverence about her as she set aside her degrees in medicine and practiced humanity. My heart swelled as I heard her speak softly to our little boy. She was kind and compassionate, even when she didn’t need to be. We were not even at her hospital, yet she went out of her way to be human. By stark contrast, a different doctor who denied our son a heart transplant was visiting other patients right next to us. Our son was dying and she never said a word to us; she walked by us as though we were ghosts. Imagine the deep psychological panic we felt when we saw other patients receiving life-saving treatments right next to us, while our child was denied help and hope. I wept so hard that night I nearly passed out from exhaustion. 

I’m not angry at that doctor for being so impersonal, nor am I angry with God that my son was called home. I am sad. Sad beyond all description. But I am not angry, for anger is a toxin that destroys us from within. 

Little Mitch looked softly into his doctor's eyes as she leaned in and said tender things to him. Dr. Kerr didn’t know, at the time, what her visit meant to my son. This was not a billable visit. Insurance wasn’t going to reimburse her travel. Instead, she came on her own accord because she remembered why she practiced medicine in the first place. She was then, and remains today, the personification of The Child First and Always.

Later that night, Mitch told me how much he loved his doctor and how special her visit made him feel. I can only hope that during those moments when my son was slipping away, he remembered the good people in his life and the love he received. I hope that brought him comfort. I hope it brought him peace.

It occurred to me during this tender exchange between Mitch and his doctor that there will come a point in each of our lives when medicine will fail us, but we don’t need to fail each other. We are all mortal and death is our inheritance. 

Though we cannot stop death, we can help each other along the way. When someone’s time has come, we can, like this good doctor, love them and offer comfort. When medicine can’t save us, we can offer love and compassion, and that is medicine for the soul. 

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“Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things.”

— Christopher M. Jones | Mitchell's Journey

The summer before Mitch passed away, Natalie and I took our kids on an adventure in southern California. Mitch, tired of using his motorized scooter, wanted to stand and go down the escalator by himself. For a moment, he wanted to feel normal again. 

Before he stepped onto the escalator, Mitch said, “Dad, will you go with me?” I smiled and said, “I would love to.” Mitch went first and I immediately followed. A few seconds later, he turned his head to make sure I was with him.

Mitch often made glances as if to say, “Are you there?” Though he was brave, he didn’t want to be alone. No child does. So, I always tried to be there for Mitch and my other kids. I was, and continue to be, less-than-perfect. In fact, I wish I could do a lot of moments over. But I tried, and I keep trying. 

As a father, I knew it wasn’t practical to be everywhere, all the time, with my kids. I had to learn to do what my brother-in-law taught me years ago … embrace a philosophy of selective neglect. That is to say, when work requires, I have to neglect other aspects of my life so that I can support my family. And when my family needs me, I will set aside work so that I might be there for my wife and kids. It empowered me to say “No” … or “I can’t” … or “I won’t.” It also taught me to say, “I will,” “I can” and “Yes.” Selective neglect caused me to be deliberate in saying yes to the most important thing and “no” or “not now” to other things. If I were forced with an ultimatum to choose between work and family, work would lose every time. Fortunately, life isn’t that dramatic and most of us can find a healthy balance that works for our own family dynamic. 

For every photo I have of Mitch, I have just as many of my other kids – each with a story of love and faith of its own. As I look through those photos, I can see each of my children doing this same thing as Mitch did in this image … possessing a quiet look as if to say, “Are you there?” From school programs to athletic competitions, my kids have always looked into the vast audience of onlookers to see a glimpse of mom and dad and to make sure they weren’t alone. To make sure we were there, supporting them. Loving them, not just in theory, but in practice.

Time and attention, service and sacrifice; these are the ingredients for love. These ingredients come from focus and effort.

For me, being there isn’t just about being physically present … it’s about being emotionally and spiritually present with my loved ones, too. Being present isn’t always easy for me; I worry about payrolls, client deadlines, employees, projects, investors and a mountain of other things. At any given moment, I’m managing five catastrophes, 40 brush fires, and 1,000 mosquito bites. And that’s just the tip of the iceberg. For me, being present takes work. If I’m not careful, I can come home from work, yet never really arrive. Being present requires me to prioritize and remember that some things matter more than others.

So, on this sunny afternoon, I practiced selective neglect; I set aside work things and lesser things so I could give Mitch and my family all of me. They are my everything, and I can’t think of a time in my life I regretted living that core value.

As Mitch turned his head and glanced at me from the corner of his eye, he wanted to know his father was with him … that he wasn’t alone. I knew Mitch was in trouble. I also knew time was short – but how short, I knew not. I only knew I had that moment, so I gave him all of me.

I am guilty of many imperfections, and I wish I were a better human than I am. And while I try to sort out my own personal growth, I will always try to be there for my family, however imperfectly. When my kids turn their head, I want them to see a familiar face smiling back at them, loving them and cheering them on.