I’m sitting quietly under the canopy of night reading my journals. These worn out books cover over 30 years of my life: stories of struggle, despair, breakthroughs and spiritual awakenings. The sound of crickets makes this moment even more nostalgic.
I have over 200 new #mitchellsjourney stories I’ll begin to publish soon. But tonight, I wanted to look further back in time.
In an earlier essay, I made reference to a dream I had that was a foreshadowing of my journey with Mitch. I’ve had two of them, years apart, in fact. They weren’t ordinary dreams - they seemed to come from a much deeper place. It’s interesting to read the details of those dreams in my own handwriting; a kind of forewarning from so many years ago.
I don’t pretend to know what’s really happening in this life, I only know we’re not alone and that something divine walks before us, beside us, and guides our ways ... most often sight unseen. Only in retrospect do things make the most sense, it seems. All the pain, injustice, joy and opportunity I’ve ever known are deeply interconnected.
When I take the time to recognize and document the many points of light in my life, I discover a kind of new, fresh courage when I step into the unknown. Life can be bewildering and hard at times, but it is also sweet and good.
This August: Featured Essays on the Making the Most of Time
We were blessed to meet a long-time reader of #mitchellsjourney over the weekend. @tandon23 and her beautiful family are from Melbourne, Australia. She dropped one of her sons off at college in southern California and then made the long drive to Salt Lake City just so she could see Mitchell’s place of rest and say hello to us.
We were humbled by her gesture of love and outreach, but worried we weren’t worth the fuss of such a long journey. We’re just a regular family trying to sort life out, after all. We were grateful to meet her in person, though, because over the years, I recognized her thoughtful comments and words of compassion. So when she said she was coming to Utah, I was excited to finally greet a friend we hadn’t met, yet.
Natalie loved getting to know her, too. She was especially humbled when Tan handed her a stuffed Kangaroo with a little name tag bearing @mi_tchel__ ’s proper spelling. That was was such a thoughtful act of kindness.
So, after a little breakfast and a visit at the cemetery, we asked them to come to our home later that evening for a BBQ. They met Marlie, Mitchell’s (not-so-little-anymore) dog, tiny Bear (Natalie’s pup), and Ethan. It was a beautiful, healing day.
I was deeply moved and reminded how much our lives are made richer when we share our hearts; both in the giving and the receiving. As far as I can tell, somewhere in the sharing of our hearts is the healing we all seek. @ Herriman City Cemetery
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.
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.
A few weeks ago, I was asked to speak with Sarepta, a drug company whose doing some remarkable work with therapies related to DMD. Just prior to my speaking they were learning about pathology and the natural course of its biology. When I was introduced, they said I was going to talk to them about the human side of the disease. They wanted someone to lift the curtain so they could peer in and see the human impact of rare, catastrophic disease.
Because their leadership theme was on frontiers, they asked that I share the tiny frontier’s we faced as a family. From starting a family to diagnosis, progressive loss, death, grief and recovery, each of these presented themselves with new landscapes and challenges.
Using the metaphor of ascending a mountain, I shared an excerpt from an essay I wrote a few years ago entitled “My Everest” where I said I would rather look up on Mount Everest from the comfort of my rocking chair, by a gentle pond.
But life is neither fair nor is it always kind. Somehow, some way, we all must climb our personal Everest.
In this post, you’ll see a few excerpts from my presentation, including a conclusion video that combines two ideas: facing new outward frontiers and the deeper frontier that is found within.
Speaking of the internal frontiers, toward the end of my address, I talked about a certain type of bamboo seed that is known to take about four years to water and care for before it breaks soil. Then, it will grow over a hundred feet in a single month. My point with that example is we can often become impatient with grief, healing or otherwise growing. I shared a few ideas that I’ve discovered that help foster an emotional and spiritual environment for deeper growth.
The video at the end of this post summarizes some of the key ideas I was trying to convey - most notably the greatest frontiers we will ever face are the ones found within each of us. And, like a bamboo seed (see post, Bamboo & Better Days Ahead), it can take years before we see growth of any kind. Patience and persistence are key.
Nearly two weeks ago, Natalie added a puppy (a teacup pomeranian) to our family. We named this tiny guy Bear. He’s a snuggler, kisser, and sometimes-ruckus-maker. Only 12 weeks old, he still has puppy breath and is quite sweet and tiny.
Mitch would have loved this dog.
I especially love how Bear follows Natalie everywhere she goes. He wants to be as close to her as he can. When she sleeps, he curls near her neck like they're best friends. I think it’s safe to say he’s a keeper.
I'm starting to grow attached to this dog - but mostly, I love the joy this puppy brings my sweet wife. Her grief journey has been long and difficult - so seeing her find a measure of joy is deeply rewarding.
Mitch loved his mom and he loved cute animals - so this new companionship is exactly what he would have loved.
I have about 30 new stories I'll start posting soon and many more to come thereafter. This post is just a small window into our family today.
I’m often asked how my children are doing with their grief journey. The answer is one part private, three parts complicated, and 100% unique. Each of my children has struggled with grief in very individual ways.
As a father, I found that my heart not only broke over losing my son, it broke over seeing my children in pain. It broke seeing my wife hurt in ways only a mother can know. In so many ways, trying to keep a family together after the loss of a child is like trying to prevent others from drowning when you, yourself are drowning. After having experienced the emotional toll of death, I now understand how families can disintegrate.
Last weekend my daughter wanted our family to take some photos in some nearby woods. I wanted to support her impulse to take pictures – and this is one I snapped at the end. Laura-Ashley is the consummate young adult: she is spontaneous, borderline responsible ;), continually discovering how the world works, and full of life. I remember being her age – in so many ways, it feels like yesterday – but then again, so far away. When I was her age, it had never entered my heart how beautiful, yet cruel life can be. But life is more beautiful than it is cruel.
Our home life is filled with ordinary moments. We do chores. We get frustrated with each other. We laugh at each other’s jokes. We talk about life and try to support each other’s dreams. Laura-Ashley has one more semester in college before she goes into nursing school, Ethan has dreams of becoming a filmmaker/storyteller, and he is continually developing his craft, and Wyatt is almost 13 and is into kickboxing, wrestling, piano, and Fortite. And Mitch … he’s still ten years old, to me. For the remainder of my days, he’ll always be tender 10.
I think about Mitch every single day – but I don’t always talk about him to my family. That is one of the great difficulties parents who’ve lost children face – we want to talk about our memories or our hurt, not realizing the people around us need a sense of new normalcy. So, each day, I take deliberate steps to be self-aware and aware of others … and try to focus on my kids, so they know they matter to me just as much as sweet Mitch did. Learning to put grief on the shelf and focus on the now is part of the grueling grief journey. And when grief calls, it knows where to find me.
Even still, my sweet daughter and other kids voluntarily talk about Mitch. Almost daily. The difference is, they bring him up in ways that are meaningful to them. Always, my kids talk about little Mitch with great love and adoration. I think we’ve found a beautiful balance of honoring what was and embracing what is.
My daughter loved Mitch a great deal – and he adored her. It warms my heart when she talks about him in the way she talks about him because those conversations are healing.
The older I get, the more I’m drawn to conversations that heal – because everyone is a little bit broken, and everyone could use a little healing.
I wonder what would happen if everyone had a chance to read the warning label before we made life decisions.
The day of my wedding my warning label might have read: “Congratulations. You are young and in love. Enjoy the calm before the storm, for the years ahead won’t always be kind to you. In fact, they will be brutal. Yes, you’ll experience triumphs, but you’ll also come to know the darkest tragedies. Though you won’t mean to, you will make choices that hurt each other and yourselves. You will fail at a business before you succeed and while you've failed you’ll find yourselves searching the couch to find enough quarters to pay for diapers. You will struggle, and you will be afraid. At some point, you’ll wonder if you're capable of anything at all. You will come to know the darkest storm clouds and your wilderness will be vast and deep. Your heartstrings will be wrenched and pulled until you can no longer stand. You will have a child that will die, and you will fall to your knees and weep until your knees are broken and worn. Pain and struggle will be your teacher. And that’s just the beginning.”
Yet, next to the warning, I would have also read a benefits label: “Take heart. Though you may feel alone, you will not be, not ever. Your Father will be with you – for He is your tutor and all that will happen will be for your good. You will have a family and come to know a love you scarcely comprehend on your own. That love you will come to feel for your children will be but a speck compared to the love your Father has for you. At one point you’ll finally understand that to know the love of family is to know a little more about God, for we are all His children. Your tears of joy and sorrow will become a lens to your eyes and you will begin to see things you didn't before. Your heart will grow and feel more love and joy than you can imagine. Like a heavenly constellation, you will begin to see the tender mercies poured out upon your lives by a loving Father - however, you will only see those stars in the pitch of night. You will make connections between them and eventually see the hand of God through everything. And that’s just the beginning.”
Today marks our 21st anniversary. On that cool September day, I married my wife, I had no idea the journey that lay before our feet. I’ll never forget crying as the officiator spoke, not out of sorrow but out of a deep sense something was being put in motion – more than I knew. All I knew was I loved my wife and it was good. I knew I would be imperfect, but I would do my best. My love for this good woman has only grown stronger and deeper. I consider myself blessed beyond measure.
Today, as I look back upon the 21 years we've had together, knowing the depths of horror and the heights of happiness – I wouldn't trade my life for anything. Between the hurt and the happiness, I have come to know a different kind of love – and for that love I am grateful. I would do it all over again. To infinity and beyond, I would do it all over again.
And to think that today I can no more read the warning and benefits labels for tomorrow.
Today is just the beginning.