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.
School has been a positive outlet for my grief too. This year in English class, we’ve been studying morals a lot. In essays about my opinion on how morals are developed, I can’t help but use personal experience to support my beliefs. Last semester, I wrote a thesis that basically argued, “If you haven’t been through a life-changing experience, you can’t be confident in your morals.” While I don’t completely believe this myself, it was proven true in my history class a few weeks ago.
I worried about my history teacher’s techniques right off the bat. His class is structured with very broad, thought-evoking questions that are aimed at individual students. While some seem relevant to the course, others can be invasive and hurtful. Let me preface this by making it clear that this teacher knew my story. It’s his first year teaching at my school so he wasn’t aware until he asked us to write about ourselves, and I trusted him. It was a mistake. The day after MLK weekend, in fourth period, history class, he asked one of his broad questions: “How does one mourn?” As soon as I saw it on the board, I knew he would call on me. I just knew. And I could already feel a lump in my throat. “Grey,” he said, “how does one mourn?” I stared at him for a moment. How could he not see the pain in my eyes? He wanted an answer, so I tried. My voice was visibly shaking as I tried to answer, “Everyone mourns in different ways.” At this point, everyone in the class except for the teacher knew it was time to stop pushing. I could feel their stares. Instead of taking the cue, he got out of his chair and walked closer, with his hand to his ear, his signature signal that I needed to speak up. My shock quickly turned to frustration. Don’t cry. This all probably lasted 30 seconds at most, but it felt like hours. I don’t think I can put into words how painful those 30 seconds were. Finally, I got out the words, “I’d rather not answer that question.” I burst into tears. Even with my head down for the rest of class, I could hear him continue to ask the same exact question to other students. He asked my best friend, who passed out pamphlets at my sister’s funeral. He asked a girl whose dad passed away five years ago. He asked several other students who I’m sure have lost grandparents or pets. And what was the point? How will this help me pass the AP exam? These are the questions I asked myself as I cried on my desk for the rest of class. When the bell rang, I tried to leave as quickly as possible. The teacher tried to get my attention but I ignored him. When I was in the hallway, finally wiping away my tears, I heard him yell my name from the classroom. Unfortunately, I’m not the kind of student to disobey a teacher. I walked back to the class. He could barely get any words out to apologize, so I gave him a big thumbs up and walked away. Not my best moment, but I was emotionally exhausted. Next period, I went to the school counselor with my friend whose dad passed away. She had cried after class because of the question. Our counselor agreed that it was inappropriate and talked to him later that day. We both received apology emails.
I wish I could give this blog a satisfying ending, but I still haven’t gotten that ending myself. I’ve been anxious in his class ever since. It’s been a month and I haven’t stopped thinking about it, as you can tell from the anger-blogging that you just read. Situations like this usually don’t upset me this much, but it just proves the thesis I explained earlier. Not everyone understands. One positive that came out of this is that I got closer with my friend who lost her dad. We got coffee together a few days later and realized that we have a lot in common. We talked about stuff that I’ve never talked about with my friends before. We understand each other. It’s important to surround yourself with people who understand you, especially when the world is filled with people who don’t.
Due to the Coronavirus, many have been social distancing for months now. We take this seriously for kids like Haidyn, with Sanfilippo Syndrome. While we may not be required to stay home anymore, I will keep sharing the stories of Sanfilippo families like mine as a reminder to do your part and be cautious for the sake of others. Here's why you should do your part for Haidyn. Read More
Due to the Coronavirus, many have been social distancing for weeks now. Staying home is much more critical for kids like Seth, who has Sanfilippo Syndrome. Here's how the Karlsons' lives have changed because of the Coronavirus - and why you should stay home for Seth. Read More