Being the sibling of someone with a disability is a story that’s hard to tell, not because it’s difficult to remember or describe, but because, for me, it’s just life. My sister is three years younger than me, and from the very beginning, her journey has been completely her own. She was born with a rare genetic chromosome disorder – a condition that shapes her ability to understand the world, express her emotions, and navigate daily life. It’s complex and unique, just like she is.
As kids, the differences between us weren’t as obvious. At first, she was close to me and my brother in her abilities – playing alongside us, giggling at the same things. But as we grew older, racing ahead in our development, the gap between us widened. While we were learning and exploring at full speed, her progress was slower and uneven. Some parts of her understanding developed over time, but others stayed relatively static. It was hard to see that gap grow, and harder still to accept that she’ll never lead a fully independent life. She’ll always need support, and that’s something that will always be a part of my life, too.
As the oldest sibling, I’ve always felt a sense of responsibility toward her – an instinct to protect and understand her that was shaped by growing up together. But that bond, forged early on, didn’t make everything easier. In some ways, it became harder as I got older and my understanding of her condition deepened. My parents had years to come to terms with her needs and limitations, while I was still young – figuring out myself, my own world, and what her disability meant for all of us. It sometimes led to tension, especially when our paths toward understanding didn’t align.
One thing I’ve always been sure of, though, is that her condition doesn’t define her. There’s far more to her than the labels or assumptions people might place on someone with a disability. She’s full of energy and personality, with passions that have shaped her world – her love for animals, her fascination with Disney, and her ability to find joy in the small things. The stereotypes about people with her condition feel shallow compared to the reality of who she is. To me, she’s just my sister.
Thinking about the future is never easy. My parents have worked hard to shield me and my brother from the weight of responsibility, but the truth is, we know we’ll always be involved in her life. Decisions about jobs, relationships, and even where we live will always consider her needs. It’s not something we resent – it’s just part of what shaped us as a family.
I’m incredibly grateful for the ways my parents have fought for her over the years, putting themselves in positions to advocate for her relentlessly – on school boards, through the PTA, wherever they could make a difference. But as I’ve become an adult, I’ve felt the vacuum that exists for families like ours when formal support fades away. It’s this part of the story that feels hardest now – the weight of knowing so much depends on us alone.
To me, my sister’s presence in my life isn’t something extraordinary – it’s my normal. What might seem unusual to others is just life to me. She’s not just my sister with a disability; she’s my sister, full stop. And though it’s been a journey marked by challenges, it’s also been filled with moments that have shaped me in ways I wouldn’t trade for anything.