From the moment I set out to write this piece, I found myself grappling with the complexity of my emotions. My brother, Alex, has profoundly influenced my life, and I’m going to do my best to articulate that journey.
Alex arrived when I was just three years old. As my only sibling, I vividly recall the day he was born. Dressed in my favorite pink flamingo outfit, I was eager to meet this little one. However, the atmosphere was tense. My mother seemed upset, yet she tenderly pulled me close. My father handed me Alex, and while he didn’t look like what I had envisioned, I was thrilled to finally have my baby brother.
Alex was diagnosed with a rare condition known as acrocephalosyndactyly type I (Apert syndrome). This meant that the bones in his skull and many of his joints were fused. He didn’t have fully formed fingers or toes, and he faced serious heart issues. These challenges led to many hospital stays that would shape our childhood.
Because of Alex’s frequent hospitalizations, I spent a significant part of my youth living with families who graciously took me in while my parents were far away at Seattle Children’s Hospital. As an adult, I still struggle with feelings of jealousy and abandonment, even though my parents did their utmost to make a tough situation bearable. The families I stayed with were incredibly kind, and I received great care, perhaps even some spoiling. Still, I couldn’t shake the desire for my family to be whole, which led me to resent my vulnerable brother.
During my early years, interactions with Alex were limited. His fragility required constant caution, and I was frequently reminded to be gentle. He was always recovering from one surgery or another, and medical routines became a normal part of our lives.
As we grew older, it became increasingly clear that Alex was not keeping pace with his peers. The gap in understanding and ability between us widened, and our family’s aspirations for him adapted to his unique potential.
I distinctly remember the moment I recognized the divergence in our lives. As a high school senior, I watched Alex, now a freshman, swinging his arms and humming—a familiar self-soothing behavior. I recalled my own homecoming experience filled with excitement, and it dawned on me that Alex would never have that.
While I’ve graduated from college multiple times, married, purchased a home, and raised three wonderful children, Alex remains in a state of dependency. His body has matured, yet his mind remains childlike, and he relies completely on our parents for support.
At times, I can’t help but wonder what our relationship would look like if Alex were neurotypical. I imagine a sibling bond filled with shared secrets and confidences, something I see between my own children.
The relationship I have with Alex is truly one-of-a-kind. We share a few inside jokes, and our interactions typically follow a strict routine. While this predictability brings him comfort, it can be frustrating for me. I yearn for our relationship to evolve into something more adult, but it feels stuck in a perpetual adolescence, much like Alex himself.
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In summary, my journey with my brother Alex has been fraught with challenges and unfulfilled desires for a typical sibling relationship. While I cherish our unique bond, I often find myself wishing for more.
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