“The Talk” has a very different meaning to most people than it does in our home. When our daughter was born, my wife, Jill, had a very clear wish that we would always be open and honest with our daughter about things. By “things,” Jill meant most everything. She wanted to be open about religion, politics, sexism, education, and every other possible topic you could think of. This included Huntington’s disease.
I thought the idea was interesting, but how do you do that with someone so young? Jill said you adjust how you talk to them. You make it age appropriate, but you also talk to them plainly and accurately.
This wasn’t something familiar in my family while growing up, nor was it something I saw in other families. As a journalist, I am always curious why people make decisions and what causes them to feel so passionately about their opinions. So, I asked her why. Why was this so important to her? Why not be like most parents and wait for them to be older?
Her answer was simple, but her reason was deep. She said that no matter how hard we try to hide things from children, they always know something. Would you rather they have information that you give them or information they find or make up themselves?
She said that a simple explanation is related to a concept that looms large in the imagination of most children: monsters under the bed. Children are afraid of the dark. If you talk about the fear, offer them a way to deal with it, and make them feel comfortable with it, they won’t need to call you to check for monsters, because they won’t feel the need to be afraid of something.
This was Jill’s thinking, and I am unaware of any research that backs up her theories. But it seemed like a reasonable idea.
As our daughter grew up, we had many interesting, and often animated, conversations that included pauses to look up facts to show each other. We all talked about how we felt about subjects, not just what we knew about them. This definitely included Huntington’s.
Jill and our daughter have lived with it as caregivers to my father-in-law, so they saw it firsthand. They also have spent a lot of time understanding it as scholars and people who could inherit the disease. When Jill was in her 20s and 30s, she did not think genetic testing was a good idea for her and our daughter. After hours of research and a lot of thought prodded by symptoms that indicated she might have the disease, Jill decided to take the genetic test last year. That’s how we found out she has it.
This prompted several long conversations with our daughter, who decided that she wanted to get tested, too. We were concerned that taking the test so young – she is only 22 – might not be a wise choice. But after talking about every aspect of a possible positive result, including the pros and cons, our daughter calmed our fears and changed our minds.
Every time we talk to her, we are amazed at her insightful way of looking at life. She is open and honest about her opinions, knowledgeable about the world, and passionate about her beliefs. I suppose all the talking we did worked out all right.
On April 26, she will have the answer that her mother has worried about for years. She will find out if she inherited this horrible disease. We know that whatever the results are, she will turn them into fuel to accomplish her dreams. We know that she has the tools to help her face a new reality, and that she is strong and brave enough to handle anything that comes her way.
Most importantly, she reminds us to not be afraid of the monsters under the bed.
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 Services, and are intended to spark discussion about issues pertaining to Huntington’s disease.