Yesterday was a day of laughter and smiles, memories and gratitude. Before the sun was about to set I asked my oldest son, Ethan, if he wanted to go on a quick adventure with me. He said “sure!” and we drove off in search of an empty field. I had suspected we’d find some unique, natural light as a storm had broken and the sun was beginning to fall behind the hills. Sure enough, we chased the light and saw a most unique sight. I couldn't help but think this photo I took of my son a metaphor for a great many things.
Ethan and I started to talk about life. Often, on his own, Ethan will bring Mitch up in conversation. Talking about our fallen family member is neither forbidden nor encouraged … we allow our family to talk about whatever, whenever. If something on their mind or heart, they’re free to speak it without judgement, prejudice or impatience.
He said, “Dad, I think I know why I was born into this family. Well, at least one of the reasons …” Ethan thinking deeply about his present and his future, continued, “I think I was supposed to have Mitch as my brother so he could teach me things I needed to know.” Ethan loved Mitch; they were the best of friends and had a lot in common. When I think of the many tender mercies along this journey, the pairing of these two young boys as brothers is nothing short of divine. They did so much for each other. Though I frequently sorrow over the loss of Mitch, I am eternally grateful he was part of my family’s life.
After our father-son adventure last night, we retired to our rooms. I was awoken in the middle of the night on another matter - and I didn't really go back to sleep. I thought to write my son a message the likes of which I wished had been written to me when I was his age. These are some of the things I wished I had known at a younger age:
SEEK PURPOSE OVER PLEASURE
Seek purpose over pleasure. Pleasure and momentary happiness are always, always fleeting; as opposed to things eternal, like purpose and meaning. If you seek after purpose and meaning, you’ll learn to see past hardships and sorrows; undaunted by troubles you’ll encounter today or any tomorrow.
THINGS MAY GO TERRIBLY, HORRIBLY WRONG
Despite your best efforts, life will be hard. In fact, it may get more difficult than you have a mind to imagine. Things may go from bad to terribly, horribly wrong. Just remember you are eternal. You are not your body – you are a soul capable of a greatness that, as yet, you do not have a mind to know. Every mortal moment is an education to your soul. Listen, watch and learn. And, if things go terribly, horribly wrong … remember that, in the end, all things will give you experience and will be for your good. Just hang on. Even if only by a pebble. Hang on.
HURT PEOPLE, HURT PEOPLE
You’ll invariably meet people in your life who’ll try to hurt you. These people will confuse the darkness in their own hearts for your motives. Always remember what Anias Nin wisely observed: “We don’t see things as they are, we see them as we are.” You may encounter some who foam at the mouth in rage toward you. Though bizarre, ignore them. They will be as a lit match: full of fury and fire for a moment, but short lived. Let there instead be a fire in your soul – not of hate and fury, but of love and light. It may blind those in darkness, but will help those with sight. Not for any reason should you hide your light.
BE KIND, NOTHING ELSE MATTERS
Be gentle and kind to others. Your little brother taught our family that at the end of the day, if you are unkind, nothing else you do in life will matter.
YOU ARE LOVED
Although the skies may draw black as night and storms may threaten to devour you … know that you are loved: both by a mother and father on earth and by heaven above. You are, dear child, utterly and completely loved.
This and so much more, I would write my son to prepare his mind and heart for the for the years to come.
My son Ethan’s journey is inextricably woven with Mitchell’s Journey … and not because I write here, on Facebook. Though I write intimately of my grief journey, our lives at home are not saturated in sorrow. Rather, we are happy, moving forward and finding purpose in each day. Ethan’s journey is enjoined with Mitchell’s Journey because he was his brother and his life and death has altered the course of ours. In fact, Mitchell’s Journey is everyone’s journey who might choose to take something from it.
As John Donne wrote, “No man is an island” … to his insightful prose, I would add we are all part of something so infinitely grand … a spiritual ecosystem so majestic in scope and purpose … were our eyes unveiled, we would finally understand things as they really are and we would weep tears of love and gratitude. We would love our enemies, do good to those that hurt us, and fall on our knees in sorrow for those who we might have hurt. We would accept our life's struggles as a necessary crucible for growth and change.
Mitch loved shenanigans.
It was a hot summer day. Ethan was opening a present for his birthday when Mitch sneaked behind him and tried to smash a water balloon against his back. Because his arms were already weakened by DMD, Mitch struggled to lift the little water weapon above his shoulders. Lunging his body forward, Mitch hurled the balloon toward his brother with all his might and ran away giggling. I loved the sound of Mitchell’s giggle; endearing as it was contagious.
My little boy never missed an opportunity to live. I don’t mean live as in breathing – though he was very grateful to be alive. I mean to say Mitch never missed an opportunity to be in the moment … to love and laugh and drink life in the best he knew how.
Sometimes bitter ironies are the strongest teachers.
Grief is another ironic teacher. I have learned, as my friend Pat Furlong (Founder of Parent Project Muscular Dystrophy) taught me not long after Mitch passed away, that grief never really goes away. She, being no stranger to grief, told me that grief is a chronic condition: you don’t get over it, you don’t go through it … you just learn to live with it.
So, I have found grief ironic because while it has the potential to drain joy and life out of living, it has taught me to appreciate life in new and meaningful ways.
Such is the duality of grief: to be happy and sad … to be whole and broken all at once. Though I may laugh, smile and be filled with joy at any given moment, at the same time I carry the weight of grief … the weight of wanting my son back in my arms. Inside the heart of those who grief is a soul that yearns for joy and happiness, yet sorrows in what is lost. It is to be okay, but not okay … and learning to accept that’s okay.
That is learning how to live.
This Memorial Day weekend, I will honor those who fought and died so others may live. At the same time, I will also reverently honor my little boy who fought to stay alive and died ... and in so doing taught me how to live.
Several years ago I was visiting Rio Tinto to discuss a leadership development course I was designing for them. Before I left their mine site, I visited the gift shop and purchased a little souvenir for each of my kids. I knew Mitch loved gold, so I got him a little water vial filled with tiny flakes of a gold-like material. I remember handing it to Mitch only to see his eyes grow big and his smile even bigger. After admiring it for a while, I followed him to his room where he carefully placed it in his nightstand drawer, among his other treasures. His room, untouched since the day of his passing, still contains all the things he held dear, just the way he left them.
It wasn’t many months later Mitch came to my office with a serious look on his face. In his hand was the little vial of gold and a big question, “Dad, how much do you think I could sell this gold for?” My first instinct was to chuckle a little because it was such a cute question. I refrained. I could tell Mitch had something on his mind and when asked, he said he wanted to sell his gold so he could purchase a new Game Boy he had been saving up for. Unaware I purchased the souvenir for around $10, Mitch thought the gold was real and that it might be worth millions. I love the innocence of children.
I told Mitch that my little souvenir was only a symbol of gold, not real gold itself. I apologized that he thought it was worth more than it was. I could tell he felt a little deflated and that his youthful imagination got the best of him. I then got on my knees and looked him in the eyes and said, “Mitch, I have an idea. Why don’t I buy that gold from you, but you keep it safe for me?” As I handed him $50 he smiled and nodded with a faint look of relief that his treasure had at least little value.
I gave Mitch a big hug and told him how sweet I thought he was. I said, “Mitch, do you know what is worth more than all the gold on earth?” With his innocent, tender eyes, he shook his head as if to say no. “You, my son. You are worth more than all the treasures that have been or ever will be on earth. I would give up everything I own to have you in my life. I would sell the clothes off my back to keep you, and keep you safe.” I then pointed to his vial of fake gold and told him, “Even if that was real gold … even if our home was made of the rarest gold … you are worth infinitely more than that.”
I knew it wasn’t possible for Mitch to understand the depth of my love; for a child cannot know the love of a parent … they can only feel an infinitesimally small portion of that love. And though he didn’t understand how much I loved him, I know he felt my love in every way a young child can.
I have never forgotten that exchange with Mitch. Since then I have thought often about life’s greatest treasures. They aren’t the things I can buy with money. In fact, I have discovered, the very things I can buy get in the way of life’s greatest treasures.
So, as I’ve been contemplating my life treasures this weekend, I stumbled into this photo of my mother and Mitch and just wept. This is my treasure. This is my family.
It’s my mother’s birthday today and I have a little something to say: thank you, mom for being so good to my son – you always made him feel special, like he was the only one.
When I think of life’s greatest treasures, a lot can come to mind. The things we work so hard to purchase, and sometimes lose our souls to find. We mine the earth and till the ground, to harvest earth’s great bounty. Some choose spend their lives with drunken eyes in pursuit of things, forever they are counting. If I’m not careful, I too, can lose my mind; forgetting heaven’s promise, “seek and ye shall find.” We can waste our days chasing things of little worth; you know, the things we gather up but cannot leave this earth. Or, we can stop the madness and maybe catch our breath … long enough to awaken and remember things are only things, and to love a soul is best. So when I see this photo of my mother and my son; generations apart, yet full of love and having fun … I remember family is my greatest treasure, worth more than anything I could possibly measure.
It was an especially hot summer that year. The desert sun beat down on our skin like an oven set on broil. For some reason, even the shade of summer trees didn't offer much relief. Although we struggled to make ends meet, Natalie and I had just saved up enough money to replace our swamp cooler with an air conditioner. Finally, our family was able to take a break from the summer heat – and we slept much better at night because our small home was comfortably cool. I remember how excited our young kids were to wear their jammies in the summer because our home was no longer hot at night.
On this occasion, Ethan and little Mitch were in the back yard jumping from our plastic jungle gym into an inflatable pool. We seemed to go through at least three inflatable pools each year because the kids were always experimenting with them and they’d invariably pop them with sticks, lawn furniture, rocks and other things. We didn't mind. While we have tried to teach our kids the importance of taking care of things, we tried to balance that with a spirit of adventure and experimentation. Getting a few cheap pools a year was a small price to pay for the memories they made.
The news of Mitchell’s diagnosis was still fresh on our minds and heavy in our hearts. While in a state of shock, we did our best to live life the best we knew how, no matter how scared we were. Looking back, I’m glad we didn't let our fear of the future overtake us – for that would have robbed us of the moment. And those moments are priceless today.
So, I sat in the shade and watched our boys laugh and play. In my mind, I began to wonder how long this pool would last, and I smiled. Little Mitch dove bravely from the jungle gym into the pool head-first. This tiny little guy never flinched at the unknown and was eager to explore the world far beyond his comfort zone. This photo is so … Mitch.
I remember thinking to myself as I took this photo how much I admired his courage and zest for life. I quietly hoped Mitch would demonstrate that same courage in the years to come as his body dove into much deeper, fatal waters. True to form, over the years, Mitch would face his fears courageously. Whether it was his first day at school, MDA summer camp, or the scare of an unfamiliar rollercoaster. That isn't to say he was never afraid. Everyone is afraid of something. Mitch just faced his fears, however scared he felt, and kept moving on. He drank life in the best he knew how – he took all of it, the good and the bad. I always admired that about him and I often found myself following his quiet example, deep in his shadow.
Mitchell’s Journey with DMD has been terrifying. Grief, even more so. Yet, I think it’s safe to say I have found a measure of peace. That doesn't mean I don’t grieve. To the contrary, I grieve deeply … so very deeply. But peace, I have discovered, hasn’t come from the absence of grief and sorrow, but in learning to cope with it. I have found the most effective way to grieve is … to simply grieve. Like Mitch in this photo, when grief comes, I just dive in headfirst. Yes, I'm afraid of grief because it hurts. But, I have found the sooner I accept the sorrow, however painful it feels, I emerge from the deep waters of grief much faster. If I resist it, I may postpone it for a season, but in the end, it catches up to me and I only prolong the hurt.
When I look at this photo I am reminded that courage has nothing to do with physical strength. It’s more a matter of the mind and heart, seeing past the things that might stop us before we even start.
Thank you little Mitch for teaching me, however painfully, to live fearlessly.