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Love

About Author, Love

A Fork in the Road

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a memoir/nonfiction book, reflecting on the many crossroads I’ve been confronted with in my life, particularly a major one in November 1978. We all face them and I believe crossroads are an opportunity to explore our potential.

The following is the first paragraph in Chapter 1 which sets the stage for the story. “Some lives seem to move smoothly along a natural continuum, with one event or decision seeming to slide into the next. Such people seem to have faced no dramatic forks in the road, had few life-altering choices to make. Other lives, at least in hindsight, travel in a particular direction at one particular life-changing moment. That’s what happened to me, when, at age twenty-two, I suddenly had to confront the most complicated decision of my life.”

Life’s crossroads create opportunity for us to choose between different options, and when we see someone embracing the moment when choices are decided upon, it can be awe-inspiring. A crossroad is about change.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is available on Therese’s author website  http://www.theresecrutchermarin.com   & on Amazon, B&N, & in Kindle, Kobo, Nook, iBooks file. 100% of proceeds goes to Huntington’s disease organizations around the world.

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We can never lose HOPE…………Therese

 

Love

A Poignant Remembrance of a Love Forged in Crisis

From the Kirkus Review I received last April:

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s is a story more about the power of hope than the wages of Huntington’s—a pre-symptomatic test for the disease eventually hit the market, but John refused to take it. As he explained: “I’d rather live my life with the hope I don’t have the mutated gene than find out I do.”

Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality. She also tenderly portrays the plight of his sisters—beleaguered not only by the deadly genetic inheritance, but also difficult childhoods stained by loneliness and abandonment.

“This is a rare treat—a true story that is as uplifting as it is heartbreaking.”

John and Therese are donating 100% of the proceeds to Huntington’s Disease organizations around the world.  To purchase the book, please go to:   http://www.theresecrutchermarin.com 

We can never give up HOPE…………………………………..

 

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Love

Excerpt from Watching Their Dance Chapter 11

John and I had been married for almost two years, and when we began talking about buying a house, the usual insecurities popped up in my brain. What if John gets sick? Could I make the mortgage payments on my salary? Could I maintain the house by myself? I pushed those thoughts away and replaced them with more reasonable questions: You’ve always wanted your own home, haven’t you? You don’t want to pay rent for the rest of your life, do you?

We agreed it was the right time to make this investment in our future. We both had good jobs, and buying a home was in the normal progression for couples building a life together. Of course, most happily married couples never doubt they have a future.

One day, John, who by then had come to know Placer County well, came home full of excitement. “I found a house for us, Therese! It’s in Loomis, a fixer-upper, but it has real potential. I can’t wait for you to see it.”  https://en.wikipedia.org/wiki/Placer_County,_California

Since he had studied architecture and worked in construction during summer breaks from college, I trusted his ability to see past what was there and visualize what it could become. Loomis, a rural area nestled in the foothills of the Sierra Nevada, was about thirty minutes east of Sacramento along the Interstate 80 corridor. It was said to be a friendly, old-fashioned community.

The night before we went to look at the house, I lay in John’s arms, delighting in his enthusiasm as he described the place once more. “The house sits on an acre, with a well, a septic system, and a pool! It has three bedrooms and two bathrooms, and the original garage has been converted into a family room, but there’s enough land for us to build a three-car garage.” John’s voice faded as I dreamed of verdant pastureland, cows grazing lazily outside the kitchen window.

I left work early to meet John and our realtor, Bonda Robinson. I couldn’t get past the magnitude of the decision, and the terrible questions nagging at me. The old anxiety pushed hard against any optimism I could muster. To calm my fears, I did what I always did: develop a plan. Since I managed our finances, I would be as thrifty as possible and save as much as I could.

Therese is the author of Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s. To purchase the book, please visit her author website:  http://www.theresecrutchermarin.com  100% of the proceeds from the book are being donated to Huntington’s disease organizations around the world.

We can never lose HOPE…………..Therese

Love

Free 1st Chapter of “Watching Their Dance”

If you’re searching for a touching love story for your summer reading, check out my offer to receive the first chapter of my book FREE. Today is the last day to receive this FREE offer.  If the first chapter captures your interest, you can  purchase the book on my author website below.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s, is a poignant remembrance of a love forged in crisis.  I share how my marriage was actually fortified by its precariousness; my husband had a 50/50 chance of inheriting the cruelest disease on the planet, Huntington’s disease.  Knowing my life could change overnight, I learned to love more deeply in the shadow of my husband’s mortality.

To receive the first chapter, please sign up for my blog below and I’ll email the chapter to you:

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We can never lose HOPE………………..Therese

Therese’s is currently writing a historical fiction novel about a young girl in the 1920’s whose Austrian immigrant family is trying to survive in Ottawa Kansas with thirteen children. To read more about it, please go to  http://www.theresecrutchermarin.com

100% of the proceeds from Watching Their Dance is being donated to Huntington’s disease organizations around the world.

 

 

Love

A Love Story-Watching Their Dance

When I explain my book to people, Huntington’s disease always takes center stage, and granted, it very important to the story.  But it is just part of the story.

My book is truly John and my love story.  The Kirkus Review I received said it eloquently: “A poignant remembrance of a love forged in crisis. Crutcher-Marin writes affectingly about the way her marriage was actually fortified by its precariousness—she learned to love more deeply in the shadow of her husband’s mortality.” My full review:  https://www.kirkusreviews.com/book-reviews/unknown/watching-their-dance/

Remember the famous love stories we watched at the movies: The Way We Were, Love Story, The Notebook, Titanic, Gone With the Wind, Casablanca. All these stories were about a love between two people that had a price to it; a challenge, crisis or a struggle that either tore them apart or kept them together.

So, Huntington’s disease was John and my challenge and, fortunately, it created a bond so strong between us, nothing could destroy it, not even Huntington’s disease.

We can never lose HOPE………..Therese 

You can make a donation to Huntington’s Disease Society of America (HDSA) by purchasing my book, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s.  Please go to:  http://www.theresecrutchermarin.com

 

 

 

 

 

Love

Remembering the Marin Sisters

I wrote this article that will appear in the HDSA Northern California Chapter Spring/Summer newsletter, The Nucleus.  https://www.facebook.com/hdsanocal/

I once read, “If you have one true friend in your lifetime, you are lucky”. With that said, I have been extraordinarily lucky! When I met John in 1976 and we became a couple, I quickly learned that being with him meant having his three older sisters in my life as well. The four siblings had had a difficult upbringing and were exceptionally close and I was thrilled when they welcomed me into their circle. Like their brother, Lora, Marcia and Cindy were kind, positive, unselfish individuals and I became closer to them than I was to my own sisters. Through the years, I would count my blessings for the loving relationship the three sisters and I shared, as they became tried and true friends. These brave, gentle souls would inspire and teach me many lessons that would enrich my life.

When the sisters discovered the Marin family secret in 1978, their mother had Huntington’s disease, I struggled with my commitment to John, broke off our engagement and walked away from the four of them. But, after much soul searching, and deciding life was too short to walk away from the man I loved, John and his sisters welcomed me back with loving arms. John and I married in 1980.

Thus began our journey into the uncharted world of living AT RISK for Huntington’s disease. Though we didn’t speak about living in the shadow of Huntington’s, I acknowledged the possible consequences of my decision to marry into a family where four individuals had a 50/50 chance of inheriting the mutated Huntington gene. In my mind, based on statistics, this inherited neurological disease with horrible odds, translated into the fact that probably two of the four Marin’s would eventually show symptoms of the disease. It was a coin toss that we all tried to ignore.

Through the years, John and I shared many good times with his sisters playing softball, having barbecues and parties, camping, taking vacations together, and just hanging out at Lora’s house in Citrus Heights. Unfortunately, in 1984, Huntington’s began its attack on the Marin women. Lora was the first to fall prey to HD with severe, deep depression that led her to self-medicate with alcohol, and she was stolen from us at age 41 in 1989. Marcia was diagnosed in 1986 after a terrible car accident that seemed to trigger and exacerbate HD symptoms and she died at age 49 in 1999. Cindy, who we thought was free from the disease, began showing symptoms at age 41 and died at age 54 in 2008. Because of our close relationship, all three sisters lived with John and I at particularly hard times in their lives and I cared for Marcia for many years until I needed to return to fulltime work.

John and I miss them terribly and we wish we could have grown old together, celebrating birthdays and the holidays together and sitting on the deck at our cabin in Lake Tahoe sipping wine and watching the sunset. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s….. http://amazon.com/author/theresecrutchermarin  

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Family, Love

The Many Blessings in my Life

John and I have been blessed in so many ways, more ways than I ever thought possible.  Our relationship endured through the difficult years of caring and watching over his three sisters, Lora, Marcia and Cindy, who were stolen from us by the insidious Huntington’s disease.  As I watched them succumb to the disease, over 28 years, I also was praying my love would not be stolen from me and my children.                                             (What is HD)  http://www.hdsa.org 

My family’s greatest gift came last year when John tested negative for the mutated Huntington’s Disease (HD) gene.  This in turn meant, our children would not live a life at risk and for that I am forever thankful.  Now, HD will not touch another Marin ever again.   http://predictivetestingforhd.com/

John and I  have so many things to be grateful for: our children and their spouses, our health, our wonderful retired life together, my father’s health at age 87, my two sisters; Jennifer and her husband Matt, and Ellen, my nieces and nephews…………………and many others, too long to list.

Sometimes we need to stop, and, as the saying goes and, Count our blessings!

Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s can be purchased on my author website: http://www.theresecrutchermarin.com

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Have a good day!  Therese

 

 

 

Love

The Introduction in “Watching Their Dance”

                                    BOOK INTRODUCTION page 6Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s

Forty years ago, a strong, cold wind blew into my life and upended everything.

I was in love with a man I planned to marry. He was extremely close to his three sisters, and I loved them as deeply as if they were my own family. I looked forward to one day having a beautiful wedding, bearing children, enjoying many good times with these women, growing old with this man.

Then we learned that all four were at risk for Huntington’s, a horrific neurological disease. Woody Guthrie, the great songwriter and singer, is still the most famous person to have suffered from this fatal genetic disorder, which causes the progressive breakdown of nerve cells in the brain—leading, eventually but inexorably, to the destruction of one’s physical and mental abilities. It’s been likened to having Parkinson’s, Alzheimer’s, and ALS at the same time. Every child with a parent who carries this mutated gene has a fifty percent chance of inheriting it.

The disease usually manifests when one is between thirty and forty-five years old. When Guthrie died, in 1967, there was no test to determine who carries the mutated gene, no treatment, and no cure. There’s a blood test now, but still no treatment. And still no cure.

Because only seven to ten percent of those who might have inherited the gene decide to be tested, it’s not known how many people are at risk worldwide. The highest frequencies of HD are found in Europe, Australia, and the United States (with one hundred cases per million people). The lowest documented frequencies of HD are in Africa, China, Japan, Finland (with six cases per million people), and Hong Kong (with 3.7 cases per million people).

But numbers mean nothing when the risk of developing this disease comes into your life, as it did mine. John and his sisters had not had a happy or nurturing childhood, and I admired them from the day we met for their ability to be positive, loyal, fun-loving, forgiving, and kind. What I learned from them could never be found in a book, a classroom, a religious setting, or a therapist’s office. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

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Have a wonderful day!  Therese

 

Hope, Love, The Marin Siblings

Remembering the Marin Sisters at the SF Writer’s Conference

As John and I drove home Sunday evening after I attended the SF Writer’s Conference, my thoughts were on Lora, Marcia and Cindy, my sisters-in-law who were stolen from us by Huntington’s disease.  The motivation I’ve had for writing and publishing the book, Watching Their Dance: Three Sisters, A Genetic Disease and Marrying into a Family At Risk for Huntington’s was fueled by them, my friends and the love John has for his sisters.

Since these three lovely ladies were so closely entwined in our lives, their experience with HD was essential to the story of how I survived for 38 years living in a family at risk for the worst disease on the planet.  As the launch date for my book grows near, my heart is filled with excitement and joy knowing these three amazing women will live in the pages of my book forever.

I HOPE thousands of folks will enjoy my book, which in turn will generate substantial revenue to help fight HD along with heightening awareness of the insidiousness of the disease.

Loralee Marin

Marcia Louise Marin

Cynthia Ann Marin

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Enjoy your day!  Therese