Choosing not to have children is a decision that commands respect
I'm proud of our daughter for forging her own path in life
As a father, I’ve had many moments when I was proud of my daughter, Alexus. I’m proud of her love of helping others; of her acceptance into one of the top schools in the world, the Massachusetts Institute of Technology; of how deeply she loves to enjoy life. Recently, she again showed her strength and clarity of mind in a way that made me admire her even more.
Alexus has made the thoughtful choice to not have children. In a world that often views motherhood as another step in the path of adulthood, her decision stands as a testament to her understanding of herself and her future.
On the surface, the decision was difficult because of societal pressures for women to be mothers. Yet it made sense. Our family history of Huntington’s disease made it easy. Alexus is gene-positive for Huntington’s. She inherited the mutated gene from her mother, Jill, who, as readers of this column know, is my wife.
Those who have the gene have a 50% chance of passing it on to their child. I refer to this as Russian roulette.
Respecting autonomy
During a recent family gathering, the topic of motherhood came up. Several people told Alexus that she will want children one day. Alexus reassured them that she wouldn’t change her mind.
Jill defended our daughter’s choice this way: “Alexus doesn’t have to have children if she doesn’t want them. It’s not our place to tell her she’ll change her mind.”
My wife’s words resonated deeply with me. They reflected not just a mother’s support, but also a profound respect for our daughter’s autonomy. Alexus is navigating her life with a maturity that is both humbling and inspiring. She is fully aware of the genetic legacy she carries and has deeply thought about the implications. Her choice is a courageous stand in the face of societal expectations and genetic realities.
Motherhood and children are amazing gifts. But Alexus’ decision points to her wanting to chart her own course, not out of fear or resignation, but out of a deep understanding of what she wants her life to be — and potentially, not wanting to pass on a gene that has caused an explosion of intense suffering in her family tree.
Alexus has inherited many things from Jill: her kindness, resilience, and the ability to face difficult truths with grace. So it makes sense that she has forged her own path, which has not been an easy one. People often challenge her. They suggest she’ll regret her decision or propose medical interventions such as in vitro fertilization, without understanding the emotional and ethical weight of their suggestions.
Alexus handles these conversations calmly. She explains her reasoning with patience, sometimes even educating those who question her choice about the realities of living with the risk of Huntington’s.
So, Alexus, your mom and I salute you. Your journey is a beacon of courage and wisdom, lighting the way for others who might be grappling with similar decisions. You are, and will always be, a source of immense pride for both me and Jill.
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.
About the Author
Comments
C WestBrook
Freezing the eggs AND having them tested for HD is the option my son (now in the end stages) along with his wife decided on. Out of the 15 eggs harvested only 2 did not have HD…they never used them because with the increase hormones they conceived their daughter (who was tested three times as a baby for HD…she does not have the genetic repeats).
Testing for HD was not available when we were considering children. We were told that he did not have Huntington, through the limited testing available then, he didn’t show signs of chorea. He always said that even if he did have HD, he was glad to have been born and happy with his life….until our sons were Juvenile HD and he was showing symptoms. The realization that they would not have a “happy” existence overwhelmed him/us.
Sharon Walker
I understand the difficulty of her decision and admire her for it. HD has so many complications and heart breaks. We didn’t know about the disease untiil after our children were born. My daughter had an unplanned pregnancy at 16 , her dad in a nursing home with HD, and her daughter pregnant at 18. My daughter has the disease and needs constant care which i provide, because her husband works. My granddaughter tested positive after having 2 precious boys who now are at risk. Already the older asks difficult questions. Thankfully the first baby tested negative recently and after years of choosing to neither marry or have children is engaged now at 31. He is dedicated to helping with his mother and sister.