Natalie Hampton
Natalie Hampton is one of the co-founders of Special Siblings Connect and a junior at HSPVA in Houston, Texas. She had an older brother, Jake, with MPS II. 
The week after my brother passed away, teachers didn’t know how to treat me. They left sticky notes on my desk that said I’m so sorry for your loss, they apologized in the halls, they wrote emails, they let me turn my work in late, they turned a blind eye if I was chewing gum in class, though technically against school policy. They couldn’t understand why my sister and I were at school instead of at home with family. It wasn’t because we were grieving less or didn’t care, but we found comfort in the routine of school. We found comfort in seeing our friends and going to classes. Advice #1: Everyone deals with their circumstances and situations differently, and just because you deal with it different than someone else, that doesn’t make your reaction any less valid. Find what makes you feel best.
When we missed school for his funeral, my US history teacher had all the students sign a card for us, and while I’m very appreciative of it, it also highlighted to everyone that our brother died. We weren’t just classmates anymore, but we were those girls with a dead brother. Previously in elementary school, a similar reputation had followed. It seemed like everyone knew our brother: he was always smiling, always laughing, always drawing people to him. And because of his physical disabilities, he was recognizable.
So for my entire life up until high school, I was known by virtue of him. But freshman year as I entered a new school with few people who had gone to my elementary or middle school, I had the opportunity to start over. When asked how many siblings I had, I could answer one sister with only a slight hesitation, and when there were days that were harder than others because I missed him (Advice #2: There will always be harder days. Take it day by day.), I could make up other reasons why. I could say it was just school stress or lack of sleep.
I considered it at first—starting over and making sure I didn’t acquire the same label—but to me, that felt like erasing him. Without him, I wouldn’t be the person I am today, and it felt wrong to pretend so. I’m not shaming anyone who has faced a similar decision and chose differently, because everyone has different circumstances and there is no one clear answer. (Advice #3: Don’t take any advice as prescriptive. It’s about knowing your circumstances and your comforts and what feels right to you. What felt right to me might not be what feels right to everyone else.) To me, the right answer was to continue to acknowledge him and his influence on me. It made for some awkward conversations when I brought him up for the first time and people didn’t know how to react—and I never expected anyone to—but it still felt right. It also allowed me to connect to others who had similar experiences, whether it was losing someone close to them or having a special needs sibling themselves. It gave me a support system of people I could talk to and would listen, even if they didn’t fully understand what I was going through. That network has been key to keeping me going in numerous ways. Advice #4: Find that support system and know they are there for you. You will have emotions and feelings that are completely normal and valid and having people you can talk to about them is incredibly valuable.
My entire life, I’ve had the label of the sibling of a special needs kid. When I was younger, I felt more unsure and scared of the title, but now, I realize I should take more ownership of it, because yes—I am the sibling of a special needs kid, and I always will be, and it will always be a major part of my identity that I don’t want to hide.