Feeling grateful despite the challenges of Huntington’s disease
As Thanksgiving approaches, I'm reminded to embrace every moment
As I type this, my heart swells with emotion. My family’s journey isn’t the easiest, but we savor it because we’re grateful for every precious second we spend together.
My wife, Jill, battles Huntington’s disease (HD) with great resiliency and courage, but it’s obvious that the condition has begun to adversely affect her. For instance, she can’t do math in her head anymore, and she gets overwhelmed by life more easily. Several months ago, she accidentally cut herself with a knife because she sliced into a cantaloupe while holding it instead of using a cutting board, like she’s always done. She isn’t as organized as she used to be.
She realizes her cognitive and motor functions are declining. Does it make her sad at times? Of course. But those bouts of sadness usually only last a short time before her smile and sense of humor return, along with her acceptance of her rare terminal illness.
Even though she’s facing a terrible storm that will only worsen in the years ahead, Jill has taught me the art of feeling grateful and embracing every fleeting moment we’re blessed to share.
The weight of her diagnosis is undeniable, and yet, I’m in awe of how the weightlessness of her spirit prevails. She faces each day with grace and a sparkle in her eyes that says, “I may be fighting this, but I refuse to let it define me.”
What makes her even more impressive is that she realizes our daughter, Alexus, is gene-positive for HD, too. And yet, instead of feeling incredibly sad about the fate of her “baby,” Jill channels her energy into being positive whenever we talk to Alexus over the phone.
Jill also tries to see her as often as she (and we) can. We recently bought plane tickets to see Alexus and her husband, and planned to arrive the day before Thanksgiving. However, Alexus called us earlier this month and asked, “Can you guys come any earlier?” I couldn’t because of work, but Jill could, so she changed her flight and is now leaving nine days earlier.
The more time we spend together as a family, the more that every smile and laugh becomes a treasure, a testament to the profound significance of what’s important in life: love.
This love helps us to transcend the trials we will continue to confront as HD progresses. And so, this Thanksgiving, my gratitude stems from the realization that every second is a gift — a present I unwrap with hope, love, and unbridled appreciation for those I hold dear.
Note: Huntington’s Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Huntington’s Disease News or its parent company, BioNews, and are intended to spark discussion about issues pertaining to Huntington’s disease.