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Tomorrow I'll have an opportunity to speak at the annual Utah Program for Inherited Neuromuscular Disorders (UPIN) conference.

I've been asked to speak on grief & hope - a topic that is near and dear to my heart.

Over the years, I've become something of a grief anthropologist, I suppose, trying to understand the meaning of my own journey. I hope to share things tomorrow that will be useful to those who face an uncertain and difficult future.

The key topics we'll cover are:
- The Deeper Meaning of Hope
- When Hard Things Happen (short overview of Mitchell's story)
- Confronting the Big Question
- A Key to Happiness
- The Healing Power of Gratitude

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.

Natalie and I spent today with some extraordinary DMD families in Dublin, Ireland. We were invited by Paula Kerr, of Join Our Boys Trust and asked to speak on hope: where to find it and how to keep it.

A few weeks ago, I was honored to speak at the 2017 PPMD conference. In this short address, I shared a tender story about Mitch and the ocean and what I learned about responding to things we can't control. I also shared other sweet experiences that remind me to treasure each moment and take special care of ourselves, our community and our children.

The rest of the conference was dedicated to science, therapy, clinical trials, and other important issues. But for this brief moment, we set science aside and talked about the things we treasure most - how to care for the ones we love, including ourselves.

If you enjoy little stories of Mitch, there are some tiny gems in this keynote. I hope something here blesses your life in some way.