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.
“... life doesn’t need to be perfect to be beautiful - and even in our sorrow, we can find deep joy.”
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.