TINY FRONTIERS

IMG_1027.jpg

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.

THE COMPASSION OF FRIENDS

Last weekend I was invited to give a keynote to a remarkable organization whose mission is to support families after a child dies. The non-profit is called The Compassionate Friends (TCF) and they just had their 38th annual national conference in Dallas. People from all over North America were in attendance and I was struck by TCF’s leadership, organization, workshops and tools they provided attendees to help bereaved parents and siblings navigate their way through grief. 

Until Saturday night, I had never spoken to an audience with such a concentration of personal grief. Virtually everyone in attendance, with perhaps the exception of the sound and light technicians, had lost a child or sibling. Every person was carrying the heaviest of burdens – yet carried with them the hope of a better tomorrow. As I shared the story of my own loss and our family’s journey through life, hospice, death and grief, I realized each of them had their own story. I found myself wishing the roles were reversed and that I could learn from them. 

Here are 4 things I shared at the end of my presentation … my personal observations on grief, hope and healing:

GRIEF IS LIKE FIRE
Grief is like a flame that cannot be extinguished. As long as I love, there will be fire. What the flame means to me … what it does to me or for me is found in how I carry it. The flame of grief can either burn me or help me see. 


THE LANGUAGE OF GRIEF
Like love languages, grief has its unique language, too. Our grief language can be as different as our fingerprints or personalities – we may share similarities, but we also have differences. If we allow our loves ones to grieve in their own way, we may find beauty in the ashes.

HEALING HURTS
At least for me, I’ve observed that healing hurts. And hurting is a necessary path to healing. The less I resist the hurt, the more I allow my grief and sorrow to run through my body and soul, the sooner the storm passes. Though I am only 2 years into my grief journey, I can promise you that the storm will eventually break. However much the sky may be pitch as night, the sun will rise again. I promise. But the sun will also set. Grief will come and go for the rest of our lives.

GATHER GRATITUDE
One of the more healing aspects of my personal grief recovery has been in finding gratitude for everything. Alan Pedersen, the Executive director of TCF wisely observed at the beginning of the conference, “We aren’t here because our children died, but because they lived.” Alan’s observation was empowering and altered the way we see things.

So I told the audience, in like manner, if we focus on the positive things we may find that our cup, though cracked and tattered by grief and sorrow may still be overflowing. Gratitude for the time we had, the lessons we learned and the things that remain … gratitude is a gift we can give to ourselves. Gratitude is a supernal gift because it heals and mends. 

As I ended my address I did what any thoughtful person might do … I wondered if I hit the mark and began to contemplate what I could have done better. By the time I found my seat I had already thought of 15 things I could have done differently to offer a little more help and hope. I thought to myself, “Okay little Mitch, next time … I’ll say those things next time.” 

Yet, when I stop and think about that experience with TCF, I realize that there is no single book, no keynote presentation, no music, no piece of art … no single thing fixes the sorrow. Yet, compassionate friends … those people who empathize and care … people who lift one another’s burdens and love each other for just being them … that has the power to heal broken hearts and broken souls to mend. 

There are few things as powerful and healing as the compassion of friends. As TCF wisely says, “you need not walk alone.” 

www.compassionatefriends.org

SOME EXTRAORDINARY WOMEN

Last night I spoke to a woman's organization about Mitchell's Journey. I was asked to speak several months ago by a woman whose name was both familiar and unfamiliar to me. I didn't connect the dots until last night when she started talking to me as I was setting up my computer. She said, "My daughter is Sage, Mitchell's friend." Suddenly everything came back to me and I remembered meeting them at Mitchell's funeral. It took a great deal of effort to hold back my tears. While there was already a great deal of love in my heart, it began to burst at the seams.

Their theme for the night was entitled "Some Extraordinary Women" so I focused my address on the amazing women who were part of Mitchell's Journey and the impact their love and service had on our family. From the meatloaf story, to paper hearts and yellow ribbons, there were so many amazing women who stepped up and offered love and comfort. 

I also spoke about the special relationship between Natalie and her sister, Sonya, and how they were a special gift to each other ... but most especially Mitch. Each story I shared drew focus to the extraordinary women in my life and the incredible blessings that came as a result of them and their selfless service.

I recorded audio of the event and will try to post it soon. At one point during my time with these extraordinary women I said I was convinced women are the most powerful force in nature. With all that I am, I believe that is true.

I then shared a quote by Neal Maxwell that read: "When the real history of mankind is fully disclosed, will it feature the echoes of gunfire or the shaping sounds of lullabies?"

In my estimation, women have more influence on the affairs of this world than society at large appreciates. 

After my address I was blessed to meet some of these remarkable women with whom I spoke. Natalie also spent time visiting with everyone and I looked upon my wife with continued admiration for the good, tender and loving woman she is. I loved the spirit of love that was felt in that room.

Earlier that night I was made aware that a woman in the audience lost her son almost 18 years ago. She sat kindly at a chair as I knelt down to visit with her. I could see a depth in her eyes that seemed to speak of the long journey of grief and healing she's experienced. After a few moments of visiting she pulled from her purse a framed photo of her lovely son. My heart swelled with compassion and love for her and her son. I hugged her and told her that I cared. I hope she felt it, because I meant it. 

There, too, was an extraordinary woman ... a mother who loves her son deeply and will never forget him. The thought occurred to me that as long as love last, grief lasts. 

With each passing day, I think I'm beginning to better understand our journey moving forward. While our journey was borne of sorrow it has become a journey of hope, healing and finding happiness.

There is so much we hope to do with Mitchell's Journey - so many ways we want to lift and help others. We hope to see you in person or virtually as we have our third annual Miles for Mitchell on April 25th. 

www.raceentry.com/race-reviews/miles-for-mitchell