Living in the present, even when Huntington’s reminds us of the future

Mothers are often told that, once they have a child, their heart now lives outside their body. For years, that line sounded like something stitched on a pillow you buy at a Hallmark store and then feel guilty about never dusting. For my wife, Jill, it stopped being a cliche and became a fact of daily life the day she learned that our daughter, Alexus, was gene-positive for Huntington’s disease (HD) — just like her mom.

Not long ago, I was reminded of that when I walked into our kitchen and found Jill standing at the sink, staring out the window, with the water running and the sponge in her hand.

I asked what she was thinking about, expecting something like, “Did you pay the electric bill?” Instead, she quietly said, “I keep wondering what it will feel like when my body betrays my brain, and Alexus has to watch it happen.”

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That’s the kind of sentence HD sneaks into otherwise normal mornings. One moment, it is soap suds and grocery lists; the next, it is the terror of a future we can’t control. If motherhood is having your heart live outside your body, HD is realizing that your heart is walking around with a ticking time bomb in its DNA.

I did what any good husband would do when faced with his wife’s worst fear: I made a terrible joke. “Well, the good news is your heart is incredibly stubborn, so HD picked the wrong person,” I said. “Also, if it messes with my favorite mother-daughter duo, I’m filing an official complaint with management.”

Jill rolled her eyes, which is how I know a joke or pun worked.

Living — and loving — in the present

Later that day, we went to a local park to meet some friends, and as Jill watched their kids play, I could see a flash of sadness, until one of them brought her a mud pie. As she pretended to eat her patty of dirt, I could tell that her mind was still standing in front of the sink where I found her earlier.

At that moment, another mom standing nearby remarked, “Do you ever feel like you’re watching your future and your past at the same time?”

Jill nodded. “All the time. But I’m trying to remember I’m still in the present.”

HD wants to drag our minds into a future full of wheelchairs and swallowing studies, or shove us back into the past, replaying every symptom we missed in family members we lost. But the present is where the living happens.

The present is Alexus sending Jill TikTok videos, and Jill replying with a witty retort after watching the clip. The present is Jill painting Alexus’ nails for a wedding because the bride decided she wanted all her bridesmaids to have matching nails. And the present is Alexus calling Jill for advice on a work issue. After Jill shared some wisdom, she hung up, looked at me, and said, “One day she might stop calling because I might not be able to answer her. I hate that thought.” She paused, then added, “But I love that today she still calls.”

There’s the terrifying part, laid bare. Huntington’s is a disease of erosion: of movement, of memory, of independence. But it is also a thief of imagined futures, stealing joy from moments that haven’t even happened yet. The only way we’ve found to fight back is to keep dragging our attention back to the small, ordinary acts of love that happen right now.

Sometimes, that looks like Jill insisting on making Alexus’ favorite dinner when we visit her in Boston, even when her hands are clumsier than they used to be. Sometimes, it’s Alexus gently taking over the chopping and pretending it’s because she’s “practicing her knife skills,” not because she’s trying to protect her mom from cutting herself.

And sometimes, it is me standing nearby, observing two people I love making every second count.

Is it terrifying to know that HD may one day make it impossible for Jill to help our daughter? Absolutely. But it is also strangely hopeful to realize that Jill’s love has already traveled outside her body into Alexus’ life, her work, her friendships, and the community she is building.

Huntington’s can shake their hands and blur their speech, but it cannot erase the years of bedtime stories, school projects, and whispered kitchen confessions that made Alexus who she is.

So, yes, mothers live with their hearts outside their bodies. In our house, that heart comes with a mutated gene and a wicked sense of humor. We don’t get to choose our DNA, but we do get to choose how we fill the time between now and whatever comes next.

Happy Mother’s Day to all of you who share those same feelings.

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.