To say “I’m grateful” is an understatement, and quite frankly, there isn’t a word that truly expresses the thankfulness I carry in my heart everyday.
Why am I appreciative? In 2016, my husband, John, decided he wanted to to be genetic tested to find out his gene status for Huntington’s disease (HD). Since HD is genetic, a negative test result meant he could not pass the mutated gene on to his children.
Our daughter Vanessa Garrett
Fast forward to 2021. In February, our son, Keith, and his wife, Fran welcomed their first child, our first grandchild, into a familyFREE of HD.
I volunteer for the nonprofit, HDSA, and their Vision Statement is, “A World FREE of HD“.
For 38 years, I worried about John and our children, praying they would be spared. Now, I sleep soundly at night and thank the Higher Power for this gift.
May is Huntington’s Disease Awareness Month, a time to remember those we lost to HD and to honor them. So, today I think of Lora, Marcia and Cindy Marin, my three (3) sisters-in-law, embrace their memory admiring the courage they portrayed during this HD journey.
If my heart had wings I would fly to heaven and enfold these three (3) women and thank them for the enrichment they bestowed upon my life. The people with whom you surround yourself have an enormous impact on your life. In many ways, they shape it.
This Thanksgiving will not be like any Thanksgiving ever before. The culprit is COVID-19, the pandemic that we have been struggling with for most of 2020.
With that said, my family, Keith, Fran, Vanessa, Scott and my sister’s family have decided to all stay home. Fran is six (6) months pregnant and it’s just not worth it because we certainly don’t want her to COVID-19. We will look forward to 2021 Thanksgiving and the addition of our first grandchild.
It’s no doubt, we will remember this Thanksgiving for a long time.
I remind myself often, that even though it’s been a challenging time for our nation, I have many things to be thankful for; my family, democracy in our nation, friends and my health.
From my family to yours, I hope you and your family have a wonderful, peaceful Thanksgiving.
Most people wouldn’t agree that it’s a gift to grow old. If you have Huntington’s disease (HD) in your family, you probably would agree. HD is a rare, fatal, genetic brain disorder that has all the symptoms of ALS, Parkinson’s and Alzheimers at the same time and there is NO CURE. For more information go to: http://hdsa.org or visit my author website at: https://theresecrutchermarin.com
Unfortunately, HD is in John’s family and his three (3) sisters inherited the mutated huntingtin gene and are gone from our sight. Each year on the birthday of Lora, Marcia and Cindy, John and I always talk about what age they would be and what they would look like. Lora died at age 41, Marcia at 49, Cindy at 54 and their mother, Phyllis, at 48.
Lora, Cindy, Marcia Marin
Through the years, our hearts have carried the loss of the sisters and is felt more intensely during the holidays and special occasions because we still want them to be with us. We can never celebrate a birthday, Christmas, Thanksgiving dinner or just hang out. We miss even something so simple as picking up the phone to talk with them. What I wouldn’t do to see these kindhearted, nonjudgemental women, who taught me about mindfulness, forgiveness, and unconditional love.
John and I are celebrating the 4th of July this year in Canada. I was attending the 2019 HDSA Annual Convention in Boston, and from there John and I traveled to Waterloo New York and stayed in Gridley Bed & Breakfast for two days to relax.
I have always wanted to see Niagara Falls, and decided to stay on the Canadian side because friends suggested it, so we arrived in Canada on July 2nd. We’re staying at the Villa Alexandrea Bed & Breakfast in Niagara Falls Canada.
From my family to yours, have a wonderful 4th of July.
On this day, the beginning of the new year, I want to take a moment to be thankful, and to remind myself to continue having forgiveness & hope in my heart, and to keep kindness and mindfulness in my everyday activities.
2019 is here and what a great year 2018 was for my family as my father is healthy at 89 years old and my sisters and children are also healthy and happy. It has been a joyous year for the Huntington’s disease community; with the positive outcome of Ionis HTTRx drug and Genentech/Roche moving quickly to setup clinical trials around the world for the now HG6042 drug. Ionis HTTRx program and its future
My sister, Jen, and our dad
John & our children & their spouses
To learn about Genentech/Roche plan, click below on video.
We Can Never Lose HOPE…….
Therese is the author of Watching Their Dance, an inspirational love story while living in the shadow of Huntington’s disease. It can be purchased on her Author Website or Amazon
100% of the profit from the book is being donated to the nonprofit Huntington’s Disease Society of America (HDSA). December 2017, she donated $9,015.00 to HDSA which was the profit from 2017 book sales.
I don’t know what I would do without my family; especially John. My kids, Keith and Vanessa, are also terrific and stand right along beside me, along with their spouses, Fran and Scott. Although I don’t say it enough to them, I have the bestfamily.
I’m blessed and thankful to have these people in my life, knowing they will always be there for me and, in turn, I will always be there for them. My love for them continues to grow along with the appreciation I feel for them. why-family-is-not-an-important-thing-its-everything/
Since I’m a Huntington’s disease (HD) advocate, and an active volunteer with the Huntington’s Disease Society of America (HDSA), I use HDSA’s hashtags, #FamilyIsEverything and #HDSAFamily on my blog, Facebook wall, twitter, Instagram and Google+ posts all the time. What is Huntington’s disease/
Give your family members a hug, forgive and remember, Family is Everything!