I’m sharing a story about a friend who purchased Huntington’s Disease Society of America (HDSA) Amaryllis Holiday Kits and sent them to her family to stay connected during the holidays. The amaryllis commonly symbolizes strength and determination. The Huntington’s disease (HD) community has adopted this flower to represent hope and celebrate the advancements in HD research. HDSA Annual Event
HD is a rare, fatal, genetic brain disorder that has symptoms of ALS, Parkinson’s and Alzheimers synonymously and there is NO CURE. What is HD
The bulbs are bringing fun and connectedness to the ladies in her family at this somewhat isolating holiday time. She ordered 7 bulbs and mailed them to San Diego (2 nieces), Modesto (2 sisters), Colorado (daughter), near Fresno (daughter) and she kept one. They all planted on December 1 and named their bulbs. (One is Minnie, one is Amy, etc. One is even Pancake because it sits on a shelf next to the pancake mix.)
Every Sunday they measure the heights of their stalks, send each other a picture, and the race is on! The bulb owner who ends up with the tallest stalk when there is a full bloom is the winner of a Cold Stone gift card. They are finding it amazing how different the growth patterns are when they all were planted at the same time.
My friend feels her family challenge is a bit silly – but they are having great fun staying connected over the holiday in this way. She is already telling herself to remember it for next year again!
We Can Never Lose HOPE……
Thank you to my friend for supporting HDSA in the fight against his horrific disease and finding a unique way to connect with loved ones.
From the moment I began writing my nonfiction book, I knew what the title would be; Watching Their Dance. It made sense to me because that is what I had done for 24 years, watched my three dear sisters-in-law, Lora, Marcia and Cindy struggle with Huntington’s disease, each with their own unique dance.
When I first heard about the disease, it was referred to as Huntington’s Chorea. The word Chorea is described as an abnormal involuntary movement derived from the Greek word “dance”. It is characterized by brief, abrupt, irregular, unpredictable, non-stereotyped movements.
The nonfiction book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family at Risk for Huntington’s is my inaugural book. It’s an inspirational love story while living with the uncertainty of my husband, John, inheriting the fatal brain disorder, Huntington’s disease, which has no cure.
I‘m continuing with the scene from Watching Their Dance, when Lora, Marcia and Cindy told John and I the family secret; their mother had Huntington’s disease.
This is the reaction I had when the Marin ladies gave us the news.
Page 16, sixth paragraph:
“I leaned back on the couch and took a deep breath as I felt this compelling information slowly registering in my consciousness, alerting my senses to danger. A struggle crept into my mind, a primal instinct screamed, Run, but my heart said, Stay. I felt as if I were being pulled one way and then another, back and forth, back and forth.”
To read the first chapter of the book, please go to my author website, https://www.theresecrutchermarin.com and sign up to receive my weekly blog and I’ll email the first chapter to you.
“I was ecstatic that John and I were finally living under the same roof. Our split-level apartment had two bedrooms, one bathroom, a cute kitchen with a bay window that my coleuses loved. Upstairs was a dining area and a sunken living room with a stone fireplace; a sliding-glass door opened onto a little balcony that overlooked a creek.
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.”
I believe we learn best through stories; whether the story is shared orally, in writing, theatrically, artistically through many mediums, painting, film, architecture, glass, ceramics, etc.
“Stories have power. They delight, enchant, touch, teach, recall, inspire, motivate, challenge. They help us understand. They imprint a picture on our minds. Want to make a point or raise an issue? Tell a story.” — Janet Litherland