BLOGS
Living Behind the Glass – My Journey with Mosaic Down Syndrome
Growing up, I often felt like I was part of life but never fully in it. People saw me, talked to me, even laughed at my jokes, but deep inside, I carried a sense of being different. That difference, I later learned, came from being born with Mosaic Down Syndrome. It’s a rare condition that affects less than one percent of people, and while it shaped my life in many ways, it never defined who I truly am.
The Feeling of Separation
I often describe it as living behind glass. Imagine standing in a room where everyone else is talking, laughing, and moving around freely, while you’re watching from the other side of a window. You’re visible, but not fully included. That was my reality. My family constantly told me, “You’re just like anyone else,” yet I could sense the subtle shifts—the way decisions were made for me, the protective walls they built, and the unspoken belief that maybe I couldn’t handle the world on my own.
Loved but Not Always Understood
I never doubted my family’s love. They were supportive, caring, and proud of me. But love sometimes came with restrictions. Their protectiveness, though well-meaning, often felt like a cage. They wanted me safe, but I longed for freedom. To them, helping me meant shielding me. To me, it meant I was not fully trusted to live my own life.
Learning to See Beyond Labels
Mosaic Down Syndrome wasn’t something I fully understood when I was young. I only knew that people looked at me differently. Teachers, siblings, even strangers seemed to measure me against limits they assumed I had. Yet, I’ve come to realize that labels are not life sentences. My condition is a part of me, but it’s not the whole of me.
Why This Story Matters
Living with a disability can often mean battling two worlds: your own desire to grow and the world’s tendency to underestimate you. My story isn’t about struggle alone—it’s about resilience, self-discovery, and learning to see my worth beyond what others expect.
Conclusion
Mosaic Down Syndrome is rare, but the feelings I’ve experienced—longing to belong, craving independence, and wanting to be seen for who I truly am—are universal. We all want to break free from the glass and be recognized not for our differences, but for our humanity. My journey is just one example of how strength often lies in simply being yourself.