I come from a long line of women with breast cancer. My mother, grandmother and great-grandmother all suffered from it. While my grandmother was able to beat the odds way back in 1966, my own mother was not; she passed away in 1991 at the young age of 42. Even with all the medical advances doctors had made since her mother's journey, they didn't have a cure, nor were they advocating preventative mastectomy and reconstruction when she asked years earlier. I was a pre-teen during the two long years my mom battled breast cancer, and I tried my best to understand what was happening to her, but I couldn't put it into words. I didn't know how to talk to my mom. I didn't know how to "be there." I was scared.
Cancer treatment, in fact, is a scary process. There's radiation, chemotherapy, hair loss, hospital stays, swelling, fatigue... the list goes on and on. My mother was changing before my eyes and I didn't like it. I wanted my mom to remain as I knew her, I wanted her to stay with me forever, I hated what was happening and I was mad. The adults around me seemed to know what to do, what to say and how to take care of my mom. I, on the other hand, was in a state of shock, unable to be there for anyone, spending time in my room or at friends' houses. I didn't know how to cope. I just wanted to know why this was happening to my mom.
Years later, I got an answer to my childhood questions surrounding the "why" of my mother's journey. In 2005, just after the birth of my first child, I decided I wanted to take a newly developed genetic test which could tell me if I was more prone to breast cancer, the BRCA (BReast CAncer) genetic marker. My grandmother took it first, presenting the background for my geneticist. It was positive for BRCA1. I then took my test and found out that I was BRCA1 positive too. This meant my chances of getting it in my lifetime were increased to 80 percent, compared to the normal population at 12 percent. This, most likely, was the reason why my mother got it too.
At the time I took the test, I was only 29 and I wanted more children, so I opted out of having any of the surgical options available to me. Knowing I had options in 2005 was a victory over my mother's lack of options when she sought them out in the 80's. I wanted to breastfeed and I wanted to give my children "me" time, not "take care of mommy" time at such young ages. So, I waited. But each year that passed left me with more and more fear—of not if, but when.
How Writing Helped Me Heal
Four years later, I was back to thinking about my mother's struggle. I had three children now, and I saw my 40th birthday just around the corner, the same age my mother was diagnosed. Increasingly, I began recalling and reliving the memories I had of her—the important ones, and the ones that will stay with me forever.
I also started writing. I began by jotting down thoughts and describing moments with my mom; I then started adding dialogue, thinking of what I wanted so badly to say to my mom all those years ago, but couldn't. A story began to take shape, and with it began a cathartic journey to healing.
Writing about my mother, while looking at my own children, was hard. I imagined what my own children would say to me if I was diagnosed, and what I'd say to them. What would I have changed about the way I handled things? I intertwined these ideas into the story as well. I didn't want to give answers, nor did I want to pretend I had the answers. I just wanted to provide happy moments, reflections and memories.
What I ended up with was a children's story dedicated to the special moments I had created with my mother, moments so many children do with their own mothers. These moments, paired with the thoughts, fears and questions I had about what was happening to my mother, ended up turning into a real book.
A Blessing in Disguise
Six years after I started writing, This Much I Know was published in June 2015—the same time that I was recovering from my prophylactic bilateral mastectomy and reconstruction and thus ensuring more memory-making years with my children. Was it a sign from my grandmother and mother? A blessing in disguise? I'd like to think so. I feel like everything has come full circle, and I've finally attained some closure. This year is the year I get my life back—and I'm hopeful that what I've learned can help other mothers and children traveling the same path I did so many years ago.
Heather Barnard is a mother to three beautiful children and a loving wife to her husband of 12 years. The family currently lives overseas where Heather is teaching and they enjoy a life of travel. When she's not teaching, she advocates for women to know their options with BRCA from genetic testing to choosing a surgeon and the types of preventive surgery.