The inheritances that shape how we love, lead, and live
My wife and daughter inherited a way of being that is clear, kind, and brave
My wife, Jill, and I recently helped our daughter, Alexus, and her husband move. One night, we had dinner together, along with some of her friends, and it began with the usual polite choreography: exchanging names, shaking hands, and engaging in small talk. By dessert, though, it felt like we’d known each other for years.
Somewhere between the entrée and the last sip of coffee, the conversation shifted to the kinds of inheritances that don’t come from a lab report. Both Jill and Alexus are gene-positive for Huntington’s disease. Alexus often talks about her mom and how similar they are in ways that matter most. I may be biased, but I agree. They are the most beautiful, brilliant, thoughtful, loving, caring, and funny people I’ve ever known.
Jill shared that Alexus, while growing up, was a mirror for Jill’s good and bad traits. Her family referred to Alexus as “LJ” — “Little Jill.”
A gift of three generations
As the evening went on, one of Alexus’ friends shared how Alexus had a superpower: the ability to communicate with anyone about anything, especially when something difficult needed to be said. The compliments are the easy part, her friend said.
What sets Alexus apart is how she wraps criticism in a tidy, unexpected package. It’s honest, specific, and somehow kind enough that no one bristles. People don’t feel blindsided; they feel respected and want to do better.
Alexus laughed and said she’d have to ask her mom where that came from. All eyes turned to Jill.
Jill leaned back, comfortable, ready to tell the story. Meanwhile, my mind leapt to a sad place. I wondered if Huntington’s would tug at her timing or steal a word that used to come effortlessly. That’s one of the quiet burdens of this disease: anticipatory grief, the habit of missing things before they’re gone. Then I came back to the table. Jill was here. The room was warm. The story was hers.
She began by describing her mother, Edwina: fierce, tough, unafraid to stand her ground. But, Jill said, there was a gentleness in her craft.
Edwina could do what people now call Alexus’ superpower: say the hard thing in a way that sent people home feeling seen, not shamed. When she was younger, Jill told her mother, “You could tell people they’re ugly and stupid, and they’d thank you for it.”
But the compliment landed wrong. Edwina took it to heart and softened in places where she didn’t need to.
Years later, Jill wishes she’d said what she meant: that her mother could explain a mistake, an error, or a blind spot in a way that made people feel good enough to want to improve — not good as in flattered, but good as in grounded and confident that the truth hadn’t diminished their dignity.
That was Edwina’s gift. It became Jill’s, and now it’s Alexus’.
Moments like that remind me how easily joy and grief can share the same table. Listening to Jill tell that story, I felt a roller coaster of emotions. In families like ours, Huntington’s is the inheritance everyone whispers about. It’s genetic math with a cruel coin flip.
But that night reminded me that DNA isn’t the only thread that runs through us. There are other legacies: the muscle memory of compassion, the steady hand of clarity, the dry humor that can defuse a tense room without drawing blood.
Those are inheritances, too. They shape how we love, lead, and live, despite Huntington’s.
As Jill spoke, her timing was perfect. The pauses were right where they always were. The story, gentle and true, landed. The table laughed, then quieted, then nodded in that way people do when something honest has been said aloud.
I caught Alexus’ eye and saw a recognition there: This is where it comes from — not from their disease, but from their light.
On the drive home, I thought about what we choose to carry forward. Yes, Huntington’s is part of our family story. It demands attention, planning, and courage. But so does kindness. So does truth-telling wrapped in care. So does the ability to look someone in the eye and say, “You’re not your worst day, and we can fix this together.”
Jill and Alexus may have inherited a risk they never asked for from a disease that could claim parts of their minds and bodies, but not who they are fundamentally. They have a strength and gentleness that makes rooms safer, friends and family better, and hard conversations possible. Between the two, there’s no question which legacy defines them.
My wife and daughter didn’t just inherit a gene; they inherited a way of being that is clear, kind, and quietly brave. And that, more than anything else, is the inheritance that matters most.
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.
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