Every year Parent Project Muscular Dystrophy does a Conference all about Duchenne Muscular Dystrophy. I was not able to attend this year and was very bummed about that. I kept hearing great things and I was able to sit down and finally watch Chris Jones’s Keynote Address given at PPMD this year.

What an incredibly honest, raw, and informative speech it was. I have followed the Jones’ family since Jackson was diagnosed. I have always enjoyed watching his honest, sincere way of educating all while showing what life is truly like with Duchenne. His son Mitchell was absolutely remarkable.  When I heard of Mitchell’s passing, I was completely torn up with emotion and heartbreak for this family.  I was filled with the knowledge and fear that this disease will too take my son. I have continued to follow along the Jones’ journey and am so incredibly proud of them for continuing to be a part of this community and for all their insight into this world of Muscular Dystrophy.

Below is a link to view the Keynote Address. It is 41 minutes long and it is completely worth every minute of it.

Chris has such a profound way of addressing the emotional layers that encompass Duchenne and helping others understand the journey.

I wanted to discuss some of the key points that were made in the video that really hit home with me.

I loved that it was called The Pursuit of Happiness: Surprising discoveries about finding joy in the journey.

I very often like the sentiment about life not going according to plan, so when Chris began the speech by saying that

The majority of life can be described in one sentence…”IT DOESN’T OFTEN GO AS PLANNED, AND THAT’S OKAY.” How very true that is!

Chris retold a story about how as DMD parents we often live in a world of isolation because in the early years people look at your son and slap you on the back with a “Wow, he looks great!” with often no idea that this disease is already doing internal damage that is beyond what the eye can see.  He called it a nieve optimism.

The rest of the talk, he went on to discuss 4 things we can do to contribute to the pursuit of happiness. Those things are:

• Gratitude vs Comparison
• Moments vs Things
• Relationships vs Isolation
• Meaning + Purpose vs Circumstance

I will go briefly into each one and touch on a couple things that he discussed that I found truly helpful.

1.Gratitude turns what we have into enough. It is not only the greatest of virtues, but the parent of all others. – Cicero

He recounts that practicing gratitude while the sun was shining because it conditioned me when things got really hard to just be grateful. On the flip side, comparison takes gratitude away. Comparison is an illusion that robs us of joy.

“Our souls were meant to withstand even the darkest of days.”

2. Moments- these are the things we often think of as being the great/grandiose experiences that bring us joy, but it’s actually the ordinary of life that can bring the most magical of moments.  Chris talks about little moments that exist in the ‘in-betweens’, because the very best moments you will ever have in your life are the in-betweens. 95% of life is mundane/ordinary. On the flip side, it is not Things that we need to collect to be happy, it is moments.

3. Relationships– our quality of relationships matter because loneliness is toxic and if we isolate ourselves it will only further us from joy.

4. Meaning + Purpose- “Seek for meaning + purpose first and happiness will follow”.

I found this message to be so incredibly beneficial and needed. What a great storyteller/leader Chris Jones is and I am so incredibly thankful to have been able to watch this address.  I highly encourage you to take the time to view this video!