I always had a feeling of being “othered.” Barry and I would just be doing normal Barry-Lexi things, and people would make them seem like such abnormal things. One way I sensed this was that people were always taking pictures of us, when we would be hanging.

In retrospect, I’m extremely grateful for that now, to have so many beautiful memories of us. But at the time it would feel like people were acting as though me being his sister was some extraordinary act of bravery or something. Often, when I would post about him, people would comment about how great of a sister I was. While it was nice to hear, it felt “othering,” because I was treating him the same way I treated my sisters- with unconditional love. I always felt like it was because Barry was disabled; people were just shocked that we were so bonded.


I think what I want people to know is that even though the way we were close- the way we played and the frequency of hugs, kisses, and “I love yous,” were different from typical sibling relationships, we really weren’t that different. If your sibling became ill, wouldn’t you do whatever you could to get them the best care, and to make sure you maximize your time with them?

An example of this, was the only time Barry ever went to the grocery store. We get into the grocery store, and it’s impossible to maneuver Barry around the displays and people, so I decide to bring him to the front of the store and just wait for my mom. So we were just sitting there, laughing and playing- doing those normal Barry- Lexi things, when all of a sudden the manager of the store came up to us with a plant, and said that he had been watching us, and he thought it was so beautiful how we were playing that he wanted to give us this plant. I thanked him, but honestly my first thought was well that’s creepy. I wondered if we had been a “typical” sibling pair if the manager would’ve had the same response. I know this came from good intentions, but it was just another reminder that Barry was different.
**Lexi Levine is JGA’s Sibling Support Coordinator. She’s sister to Barry who passed away in 2015. Lexi’s insightful takes on life with a sibling with Jordan’s Syndrome are always a favorite of our families around the world. Read more about Lexi here.


April 20, 2023