To be “at risk” for Huntington’s disease (HD)
“At risk” are heavy words for me. They are not as heavy as they used to be, but still heavy. I don’t want to speak for others who are at risk for HD, but I would guess many of those people feel similarly as I do, that being “at risk”, well, sucks (and for those who know me well, know I hate that word and never use it).
What does being “at risk” for HD mean? Factually, it means you have a 50 percent chance of having the disease because one of your parents has it. But, really, it’s more than that for me, my family members and many others I know who are “at risk”.
For me, being 11 years old and finding out I was “at risk” meant thinking about dying and wondering how long I might live. It meant spending my middle school years not really caring about how I did in school and eating my pain away. Being “at risk” meant debating with myself over getting married or becoming a nun because I didn’t want another wonderful man to have to experience what my dad did in watching my mom become sick and die. Once I met Jason, and we spent countless hours talking about HD and what the future could bring if we married, I knew that marriage was right for us. That brought on another layer of being “at risk”, as we discerned whether bringing children into the world, who could potentially inherit HD from me, was the right thing to do. Obviously, we decided that God was calling us to be parents and we have never regretted having our 7 earthly children. We long to see our 7 heavenly children one day.
Now I am 43. If I remember correctly, my mom was diagnosed when she was 44 and my sister Lisa was diagnosed at age 42. When I was 35, I banned Jason from celebrating my birthday with more than just a small celebration with our kids. I have dreaded my birthday since age 35 and not just because I am getting older, but because I am “at risk” for HD and because HD most commonly shows up between ages 35 and 45 years old. Jason understands and respects my wishes, as do my kids. Some birthdays I’m okay, many I am not. That’s me and that’s part of my journey. My sister was admitted to ICU on my 36th birthday. She went to her heavenly home soon after.
Being “at risk” means wondering daily if your hands are shaking because you drank too much caffeine or because HD is starting. It means dropping a pan or leaving the stove on, again, and thinking “it must be HD starting”. It means calling your kids the wrong name 10 times a day, and thinking, “mom did that, maybe I have HD too” or forgetting simple things that you never used to forget and wondering, “could this be the start to it all?”
“At risk” for HD also means not being able to purchase a life insurance policy for yourself and potentially being turned down for medical insurance and long-term care insurance. “At risk” means deciding whether you should be tested to find out if you do, in fact, have HD, which then brings an entirely new set of issues.
Yep, it can be depressing. In the words of my daughter Hannah, “but there’s hope!” Hannah was recently assigned a research presentation on a genetic disease for her life science class. She chose Huntington’s disease. She did well on her research but was not impressed when she found nothing about potential cures or treatments in her online research. Hannah took the opportunity to share with her class about Harvest Hope Farm, Shepherd’s Gift for GM1, and of course the “special sheep”! This mom couldn’t have been prouder of this 7th grader.
Yes, the words “at risk” used to be very heavy for me and truly impacted many of the decisions I have made in my life and with my husband. But now, over the past few years, I have made an active decision that, for some reason I wasn’t able to make before, and that’s to live more for the moment rather than for what the future may hold. To be mindful that, although I have a 50 percent chance of having HD, I also have a 50 percent chance of not having it either. I’ve decided that I need to live now, even more then I have, for my children, for my family and for all those HD angels and their families.
Life is not about the what if’s and I won’t say I don’t ever consider them because that is impossible when you are “at risk” for HD, but it’s about the moments. The small moments that you can enjoy every day in the things that you do, like looking at the moon with your kids and listening for the owls to talk, playing a game, making a phone call to the person that has been on your heart, or just being present and enjoying the moments as they come.
For those of you who are “at risk”, I get it. I’m there. I feel for you and I am with you. You are not alone. I know it feels that way sometimes because not many people understand what we are going through. Hang in there, pray, find your moments to enjoy - big and small - and live! Live for you and your family; don’t miss out because no one knows how long they have of this amazing thing called life!