From the moment I crafted this title, I’ve felt a profound challenge. It’s tough to encapsulate the deep influence my brother, Alex, has had on my life. Yet, I’m determined to share my story.
Alex entered our world when I was just three years old, making him my only sibling. I vividly recall the day he was born, dressed in my favorite pink flamingo outfit, filled with anticipation to meet my new brother. The atmosphere was tense; my mother seemed unsettled, but she welcomed me into bed. My father then placed Alex in my arms. He looked different from what I had imagined, yet joy surged within me. He was my little brother.
Alex was diagnosed with a rare condition known as acrocephalosyndactyly type I (APERTS). This meant that many of his bones, including those in his skull and joints, were fused together. He faced significant cardiac issues, resulting in lengthy hospital stays throughout our childhood.
Because of his ongoing health challenges, I spent a considerable part of my early years living with various families who graciously took care of me while my parents devoted their time to Alex at Seattle Children’s Hospital. Even as an adult, I find it hard to express the jealousy and feelings of abandonment I felt during those times. My parents did everything they could to make a tough situation bearable, and the families I stayed with were incredibly kind and attentive. Yet, the longing for my family to be whole never faded, and I began to harbor resentment towards my helpless brother.
My interactions with Alex during our childhood were limited—not solely due to his frequent hospitalizations, but also because of his delicate condition. I was constantly reminded to be gentle with him, as he was often recovering from one procedure or another. Routine changes in his dressings and medications became part of our daily life.
As we grew older, it became increasingly apparent that Alex wasn’t meeting the developmental milestones expected of his peers. The disparity in our understanding and capabilities became more pronounced, and our family’s aspirations for him adapted to align with his abilities.
The moment I truly grasped how different our lives would be happened during my senior year of high school, while Alex was just starting his freshman year. After capturing homecoming pictures, I spotted him swinging his hands and humming—a typical self-stimulatory behavior for him. My heart ached as I reflected on my own homecoming experience, filled with excitement and anticipation. I realized he would never have that.
Since then, I have graduated from college multiple times, married, purchased a home, and welcomed three children into the world. I have experienced both triumphs and mistakes along the way. Meanwhile, Alex remains in a childlike state, reliant on our parents for every aspect of his care. He struggles with change and regulating his emotions.
There are moments when I can’t help but imagine what life would have been like if Alex had been born typically. I find myself daydreaming about what it would be like to share a close sibling bond, a built-in confidant in life. I often feel envy for the strong connections my children have with each other.
My relationship with Alex is undoubtedly unique. We share a few inside jokes, and most of our interactions follow a predictable routine. While this repetition offers comfort to him, it can be frustrating for me. I wish our bond could evolve into something more reflective of adulthood, but it remains entrenched in a perpetual adolescence, just like Alex.
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In summary, my journey with my brother Alex has been a mix of joy, frustration, and profound learning. Though our relationship may not mirror the typical sibling dynamic, it is filled with love and understanding.