I’ve been going to the same school for twelve years. My school is my second home. It’s been a constant in my life through so much change. In Pre-K, my sister was diagnosed with Sanfilippo. In Kindergarten, I started a fundraiser to find a cure. As Blair got older, she lost more and more abilities. As I got older, I came home from school to less and less energy from my energetic older sister. When I was in fourth grade, Blair had her first seizure. In seventh grade, she was placed in hospice care. She passed away weeks later. Through these changes in my life, school was a constant. For siblings of the terminally ill, school can be a place of relief or reminders. It can be a distraction from your home life, but it can also make you feel alone. In a sea of students worried about gossip and teachers worried about grades, it can be hard for a “super sib” to feel understood. I’m lucky to have incredible support at my school, but it hasn’t come without its challenges. My main goal for The B.L.A.I.R. Connection in 2020 was to be more real, so here it goes.
Ever since my sister passed away, the first day of school has come with mixed emotions. While I’m excited for the new year, I’m also nervous about meeting new people who may or may not know my story. This goes for students and teachers. I listen for a different tone in teachers’ voices when they call my name on the first day, wondering if they know. I always appreciate when our first assignment of the year is writing about yourself. My sister is such a big part of who I am and I like my teachers to know that part of me. Sharing my story doesn’t make my teachers treat me any differently, but I’d hope it makes them understand me more. Still, people who aren’t “super sibs” can’t be expected to understand certain triggers. For example, a teacher I had last year would always ask us to get into partners and talk about the lesson. She would say, “Tallest goes first” or, “Youngest goes first” and sometimes, “Whoever has the most siblings goes first.” My heart dropped every time. For most kids, that’s not a hard question. For me, it’s the hardest one. If I say I have no siblings, I feel guilty. If I say I have one, I feel confused. I dealt with it differently each time. Most of the time, I just told my partner to go first without an explanation. Every time, it ruined my day.
I wish I could give this blog a satisfying ending, but the truth is: not everyone understands. It’s important to surround yourself with people who do understand you. I've been lucky to find a few of these people at school, but even when you may feel alone... super sibs around the world are having the same experiences.