Life is fragile because it is finite; our lives are not endless, but they begin and they come to an end.
We can lose loved ones in a split second, major changes can happen on a whim and there are many, many things outside of our control.
Lora, Cindy, Marcia Marin
That is what makes life so fragile.
If anything, Huntington’s disease (HD) has taught me not to take life for granted. When I first learned of HD being in the Marin family I could only think about how unfair it was to Lora, Marcia, Cindy and John to have to live in the shadow of HD; living at riskwith a 50/50 chance of inheriting the mutated huntingtin gene from their mother. With time I came to realize that knowing my world could change overnight was a gift and I began to live MINDFULLYeach and every day and I never took John, our life, our love for granted.
I share my experience in my blog today as a reminder that, “We are fragile creatures, and it is from this weakness, not despite it, that we discover the possibility of true joy.” Desmond Tutu (South African bishop)
John and I have been helping Keith and Fran, with our three and a half month old granddaughter, Marlena, since Fran went back to work and still works remotely.
Last week as I sat on the couch holding her, amazed at her progress in just three months, I reminded myself to stay present, relaxing in the beauty of the moment. I consciously did not let my mind wander, like it usually does, but kept my focus on Marlena. As I focused my awareness on the present moment, my breathe slowed, my shoulders relaxed and I felt Marlena’s body relax against me. I breathed in her baby smell, kissed her cheek and squeezed her a little tighter, acknowledging the many blessings I have presently right in front of me.
One of the best tools to practice staying present is mindfulness. Mindfulness is essentially an accepting, open, non-judgmental and curious focus on one’s emotional, cognitive and sensory experience in the present moment. Simply put, mindfulness is present moment self-awareness.
It takes some concentration and the rewards you reap are wonderful.
We Can Never Lose HOPE….
I’m a Huntington’s Disease(HD) Advocate, Chair for HDSA San Francisco Bay Area Affiliate, a blogger and author or Watching Their Dance. My Author/HD Advocate Website
Author Therese Crutcher-Marin
Please make a donation to the nonprofit, Huntington’s Disease Society of America. You can help us in the fight to eradicate this horrific disease so no one has to suffer anymore. Donate here.
Needless to say, I don’t think anyone would disagree that 2020 was a year like we have never experienced before. The number of Americans dying from Coronavirus is staggering.
As of today, December 30th, 2020 over 339,000 Americans have died a horrible death and more than likely, died alone.
Since my family was at risk for the cruelest disease on the planet, Huntington’s Disease, a rare, fatal, genetic brain disorder with NO CURE, John and I always lived our lives MINDFULLY and TOOK NOTHING FOR GRANTED. What is Mindfulness?
This unprecedented year, has reinforced the importance to live in the moment, appreciate and enjoy the day. California is in such a bad way with COVID-19 that John and I have not seen our children much this year. I cherish them more and tell them I love them often. Also, during the pandemic, I have felt closer to my sisters, nieces and nephews and believe I understand them more than I did before.
I pray this will be the last pandemic the world will have experience, for awhile, and I hope we have learned from it.
The other day, a gal said to me, “Your family does so much; you travel a lot, your kids do marathons, triathlons, you give time to the the Huntington’s disease cause, the homeless, you write books.” She looked at me quizzically, “Why do you do so much?”
I looked at her curiously, thinking it was a funny question because this is how we have always lived our lives. We taught our children to work hard and play hard and I remember saying to them over the years, “Life is short, enjoy it, experience it; tomorrow is not promised to anyone; we never know what the future will bring, take a chance, have no regrets, learn from your mistakes”.
When Huntington’s disease (HD) entered our lives, it taught me many things and one was to appreciate the life I had with John and the kids every single day. We didn’t know, until 2016, whether John inherited the mutated huntingtin gene, so we embraced life with the kids and had as much fun as possible together.
I believe that recognizing and embracing the little things in life every day is important to our happiness. I explain it in my nonfiction book.
Watching Their Dance: Excerpt from page 61, Chapter 7
John and I had just gotten married and back from the honeymoon and settling into our apartment in Roseville California.
“Anyone looking at us would have seen a happy, well-matched couple starting what seemed a wonderful life together. Little would they know the challenge that lay quietly beneath our joy. Every day, I consciously reminded myself to live in the present moment. It was the small stuff I savored: waking up next to John, seeing him every night, eating dinner together, talking about our day, feeling his arms around me. Those moments were precious, and I selfishly saved them just for me.”