Posts tagged Speaking
TINY FRONTIERS
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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.

MITCHELL'S JOURNEY KEYNOTE


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.

NORTH CAROLINA*


Natalie and I just returned from North Carolina where we shared Mitchell’s Journey with the pediatric medical staff of New Hanover Regional Medical Center. We were so inspired by the incredible kindness and compassion of their staff, hospital administrators, and surrounding community. On this trip, we shared two presentations: What Happens on the Other Side of Medicine (for medical practitioners) and A Practical Guide to Making Moments Matter (for parents and caregivers).

That is what makes all of this journey worth it ... to see other lives blessed.
— Christopher M. Jones | Mitchell's Journey

There is another side to Mitchell's Journey that isn't always apparent in our grief stories, and that is the practical, "I can do that!" guide to making moments matter. It was so fun to share that presentation on Thursday at one of their events. We shared what our family has done over the years to make moments matter and offered 6 ideas on how to turn ordinary moments into extraordinary ones.

Our hearts were overflowing to see parents come up afterward and express their feelings and personal discoveries. One young boy came up to me and said enthusiastically, "Do you know what we're doing tonight? We're having our first family night." He was so excited to spend quality, focused time with his mom and dad. I nearly broke down in tears. Other parents said they felt like they had an awakening. That is what makes all of this journey worth it ... to see other lives blessed.

Another woman, Stephanie Burney, also spoke. She’s a local mother who lost her daughter in a tragic zip line accident almost 2 years ago. That was her first time speaking to an audience about her tremendous loss and she did a wonderful job sharing the impact a medical community can have on the lives of families who experience any kind of medical hardship.

After our time with the medical community, we spent time with two gentlemen who own a funeral home (Wilmington Funeral & Cremation) that we were honored to meet last year at a different speaking engagement. These two men are some of the kindest and most compassionate people I’ve ever met. They introduced us to a family who lost their 19-year-old son to DMD a little less than a year ago. So, on our last night, we spent time at their home to learn more about their story. We were so inspired by their goodness. There are stories just like that of little Mitch, all across the world. I wish I could tell their stories of faith and courage, love and family. Perhaps one day. That would be a dream.

This has been a lovely, healing trip. There's something very special about the people of Wilmington, North Carolina. You may come into town a stranger, but you leave as friends. That's not their slogan, but it should be.


Day 1 Speaking Event: What Happens On the Other Side of Medicine

Day 1:  Prior to speaking to NHRMC staff

Day 1: Afterward, NATALIE talking to participants


Day 2 Speaking Event: Making Moments Matter

You can read more about this event here.

Day 2: NUNNALEE ON THE MOVE

https://www.nhrmc.org/nhrmc-foundation

 

The new pediatric center being built by NHRMC

 

A DMD Family:  Once Strangers, Now Friends

This is the DMD family we have grown to love and admire.