An excerpt from Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community.
These days as my father’s Huntington’s disease progresses and I take on more and more, I have learned how quickly being a caregiver can consume my life. Yes, he is still living two hours away, and I don’t take care of his day-to-day needs, but I do everything else for him from paying his bills to booking doctor appointments, following up on every detail, and making sure his supplies are stocked. When he became suddenly ill after a routine vaccination and ended up in hospital, I was at his bedside advocating on his behalf for weeks on end until he was well enough to go back to his retirement home. Sometimes I feel like I can’t live my own life because I feel guilty about the things he can no longer do. I know that is no way to live. So I am trying to learn, at the same time as teaching my daughter about self-care, to take time for myself, and that another person’s life cannot become your whole life. I know my daughter is picking up on even more than I realize. This was never more evident than when she had a day off from school, and we were out for brunch together.
As we sat in the booth waiting for our bacon and eggs, my nine-year-old daughter asked me a shockingly insightful question. She knows that I am gene-positive for Huntington’s disease and that I am going to develop the disease one day.
“Mom, is it hard for you taking care of Grandpa, knowing the same thing is going to happen to you?”
I started crying because I was so touched by her thoughtfulness. This is something that most adults in my life don’t even understand.
“Yes, that’s the hardest part about Huntington’s for me. Being able to take care of Grandpa without constantly being upset about my future,” I told her honestly. I was so proud of her for showing such empathy. I got out of my side of the booth, slid in next to her, and gave her a huge hug.
“Thank you for being such an amazing kid,” I said.
Learning how to deal with HD in our lives is giving us the tools to handle other hard things that will undoubtedly come our way. I know we will be OK, no matter what. My daughter will be equipped for what is to come because my husband and I are teaching her those lessons now. If there is something we fail to teach her, I know she will be able to advocate for herself and find the help she needs.
What gives me hope for our future with Huntington’s is that I am giving my daughter the skills to handle it.
Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.
