This week’s blog was written by Erin Paterson who discusses her experiences of living with Huntington’s Disease (HD) and trying to start a family.
I was sitting on the edge of the bed at 9am staring at the hardwood floor. It was almost time to start work, but I couldn’t gather the strength to move. I had no idea how I was going to make it through the next five minutes let alone an entire day. Lifting myself from the bed and getting dressed seemed like an impossible task. The only thing motivating me to get to moving was my fear of being at home alone. It was always during those quiet moments when I started ruminating about my future. I had recently been diagnosed as gene positive for Huntington’s Disease (HD) and I was terrified.
I was thirty one years old when I learned that HD might run in my family. It was when my husband and I decided to have a child that my parents told us their suspicions, that my grandmother might have had the disease. Since my biological clock was ticking I went through genetic testing and found out my results within a short eight months. Not a lot of time to make a life altering decision. After receiving my test results, I fell into a deep depression. Not only did I have to face my future with the disease, but I also had to decide if I still wanted to have children. Would it be morally correct to risk passing on the disease to my child? Could I live with the guilt if they inherited HD from me?
Despite the fact that there was a fifty percent chance that our baby could inherit the gene, we decided to have a family anyways. I focused on the fact that I was going to be a mom and tried to push any doubts about my child being at risk for HD out of my mind. One year went by and I still wasn’t pregnant. That’s how we wound up seeing a fertility doctor.
At first, we did fertility treatments that were as minimally invasive as possible. We started off with cycle monitoring. When that didn’t work, we moved on to inter-uterine inseminations (IUI’s). I spent month after month at the fertility clinic having ultrasounds, giving blood, taking medications and meeting with the doctor. Our lives revolved around treatments. Unfortunately, nothing worked so we decided to try in-vitro fertilization (IVF) with pre-implantation genetic testing (PGT-M). PGT-M is a test that can be performed on embryos to determine if they have HD. During the IVF process, only the embryos without HD are used. We attempted the procedure twice without success. By that point in time, I didn’t think I would be able to ever do another fertility treatment again.
We were faced with another life-altering choice. Did we want to live child free or try to adopt? I always knew that I was meant to be a mom and I didn’t want to give up on my dream so we decided we would try to adopt. Miraculously, five and a half years after we had started trying to have a baby, we created our family through adoption.
Those were the hardest years of my life. At the time, I couldn’t see how I would ever be happy again. The only thing I knew was that I didn’t want my genetic diagnosis and my infertility to ruin my life. So, I focused on my goal of happiness and my dream of being a mom and I took it one step at a time. When something didn’t work out, I tried to figure out a different way to get there and I kept on pivoting until I reached my goals. I finally became a mom like I had always dreamed of. Through a lot of soul searching and therapy, joy and happiness once again became a part of my life.
There was a time when I couldn’t think about or talk about HD without crying. Now a days I spend my evenings writing about my experiences with HD and infertility because I want to help others. HD isn’t something everyone wants to talk about and I know how hard life can be when you feel alone.
Erin Paterson’s memoir, All Good Things, is the work of a true writer with true charm and triumphant courage. It is about being faced with questions that seem impossible to answer, choices that seem impossible to make. If you knew that a family member carried the gene for an ultimately fatal disease, and that, therefore, there was a 50 percent chance that you carried it too, would you get tested to find out whether you did? What would you do if the result of the test was yes, you had this dormant (for now) gene that would definitely awaken in you someday and shorten the life of your mind and body? How would you go on living? Would you, in spite of what others might say, try to have a child who itself would have a 50 percent chance of carrying the fatal gene? These are matters that not even King Solomon himself could resolve. In All Good Things, Erin Paterson tells the extraordinary story of how she, and her husband, answered these questions and many others. The book is powerful, sweet, moving, tender, and yes, I’ll say it again, courageous. If you read it, you will never forget it.
Wayne Johnston, author of The Mystery of Right and Wrong and The Colony of Unrequited Dreams
What readers are already saying!
“A raw and honest account of Erin’s journey with testing for the genetic condition Huntington’s disease and wanting to have children.”
“In the HD community and beyond, we often use the term “warrior” and say, “It takes courage to tell your story.” The reasons are self-evident as Erin compellingly shares her years of lows, highs, and surprises. Now when others share their stories, concerns, and worries with me, I can easily imagine how many, many times I’ll ask, “Have you read Erin Paterson’s All Good Things yet?” It’s her gift to the HD community and others far beyond.”
Jimmy Pollard, activist and bestselling author of Hurry Up & Wait!
All Good Things is available on Amazon, so claim your copy now!