Honoring my mother-in-law’s influence on our life with Huntington’s disease
On Edwina's 80th birthday, we celebrate her quiet strength and lasting impact
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In life with Huntington’s disease (HD), our family’s calendar fills up quickly. There are checkups, follow‑ups, and scans that land on days you would rather spend at the park or at a movie. Maybe that’s why, when a birthday shows up on the calendar, our family treats it like the best kind of breaking news.
When you are part of the Huntington’s community, you learn to pay attention to time. Every birthday becomes a chance to pause and say, “We are still here together.” In our family, the face at the center of that sentiment is my mother‑in‑law, Edwina, who will be turning 80 years old in a week.
A lasting legacy of love
Readers of this column have met her before. I have written about how she cared for her husband, Ken, who was gene-positive with HD, and how that shaped our understanding of what it means to show up for one another. I have shared how the disease did not stop with him, but continued into the next generations, affecting my wife, Jill, and our daughter, Alexus.
But long before I knew her as a caregiver, she was Jill’s mom. When Jill talks about growing up, her memories of HD are mixed with ordinary family life. She remembers how her parents tried to keep things as normal as possible, even as her father’s symptoms slowly made life more complicated. There were still trips, celebrations, and traditions that had nothing to do with doctors.
It’s clear that Edwina raised a family that understood both seriousness and silliness. That balance shows up in the way Jill faces her own gene‑positive status today. She can talk about clinical trials and research, but she can also crack a joke or plan a vacation because she watched her mom do both.
Her mother’s influence is also apparent in how our daughter approaches the disease. When Alexus chose to get tested and learned she is gene-positive, it was another difficult chapter in our family’s story. The way we talked, listened, and made space for one another in that moment reflected lessons that trace back to my mother-in-law, who had already walked through big, life‑altering news with her own children and knew that what people need then is presence and practical care.
I once wrote about talking with Edwina and learning more about her caregiving history. She shared the experience of tending to her youngest child after a serious car accident that led to a coma and then to recovery from a brain injury. Long before HD entered our immediate household, Edwina was learning how to sit with uncertainty and celebrate progress that came in small steps. Those experiences prepared her for the long journey with Ken and then for supporting Jill and Alexus.
Another time, I described how our family thinks of HD as a “family tradition” we didn’t ask for but cannot ignore. It shows up in our medical charts and in the questions we ask about the future. Yet we are also trying to build a different kind of tradition alongside it, centered on talking openly, supporting one another, and noticing signs of hope, such as new research or potential treatments.
When Jill and I travel to Pennsylvania to celebrate Edwina’s birthday, we will be thinking about the generations she has influenced: the husband she cared for, the children she raised, and the grandchildren she has cheered on as they faced their own HD decisions. We will remember conversations where she shared her perspective and helped us see that, even with a diagnosis in the room, families can still love, plan, and hope.
If you stop by her house on her birthday, you will probably leave with several things that sum up our approach as a family living with HD: an honest conversation, a lot of smiles and hugs, and a slice of cake to go.
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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