What Family Means to Me

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by Alexus Jones |

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Growing up, my grandparents and I drove every summer from Florida to Pennsylvania to visit our extended family. I spent time with their siblings, nieces, and nephews who still lived in the state. I adored my family, and in turn, they adored me.

At the time, family was a simple concept for me: They were the ones I shared a family tree with. I believed that you loved anyone that was part of the family, and family members should always be in your life.

As a child, I wasn’t aware of things that didn’t affect me directly and was mostly kept out of adult conversations. That is probably one of the reasons I enjoyed the trips with my grandparents. However, when I got a bit older, I learned more about the world and was included in conversations. This development, combined with many other small events, made me reconsider what family means to me.

As I grow older, the idea that family is limited to those whom I am legally or biologically connected to makes less sense to me. I currently define family as those I actively want in my life and with whom I feel a deep connection. Some fit into the definition I had as a child, while others match my new definition. And there are people in my life who didn’t fit my initial definition until now. 

Some of those who fit my new definition of family accompanied me to the clinic when I received my Huntington’s test results. While they are unrelated to me according to a family tree, they were there to support me on that difficult day. I go to them when I’m stressed or sad or just need a hug.

Who do I want to be there for me when I am going through a hard time, such as when my mom’s Huntington’s symptoms increase, or later, when I start to show symptoms? With less time and energy, who do I want to spend that time and energy on? I want to spend it on people who will be there for me. 

Everyone has their own definition of family that is shaped by the culture they grew up in and the experiences they’ve had. My definition may change over time, but this is what it is now. My family is composed of those in my life who will be there for me, no matter how bad Huntington’s gets.


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.


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