Huntington’s Has Strengthened My Relationship With My Mom

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by Alexus Jones |

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Having a parent with Huntington’s disease influences my life in many ways, most of which I’m likely unaware of. It influences everything from my plans for the future to how I view the world.

My mom raised me to be independent (like that Destiny’s Child song). She would always tell me I shouldn’t feel pressured to visit them, and I should live my life in a way that makes me happy. Still, I can’t help but consider her in every big life decision I make.

One recent example of that influence was when the company I work for opened up an office in London. If my mom didn’t have Huntington’s, there is a chance I would have considered transferring there for a few years. But she does have Huntington’s, so I didn’t move to London.

I’ve written previously about how guilty I feel living so far away now, and I’m only a three-hour flight from her. If I were living an entire ocean away, I would feel 10 times worse.

I want to stress that my mom would encourage me to move to London if that was what I wanted. But I know myself well enough to understand that I wouldn’t be able to handle the distance or the guilt. Knowing that the time I have with my mom is limited makes every day with her more meaningful.

While some people my age might go on vacation and do recreational activities like skiing, I am taking off work next week to spend time at home. Luckily for me, my mom is amazing, so spending time with her is not a big ask.

I am excited to have a week off just to spend time with her. Normally, when I am home, we spend our time rewatching old TV series (such as “Pretty Little Liars and “Charmed) and talking. We are a lot alike in many ways, but we have different takes on the world, which leads to interesting discussions. 

More than once I have wanted to move back to the Chicago area where she lives to be closer to her.  From my dad’s writing, I know they miss me as much as I miss them. However, I wouldn’t be happy there, and my mom would feel horrible if I did it just for her. Instead, I looked for homes in the Boston area that are big enough for her and my dad to stay with me when they visit.

I don’t know if my need to be close to her is due to Huntington’s disease or if it’s simply that I’m an only child. I don’t think I’ll ever know for sure, but it’s definitely a good question to ask my therapist.

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