TD.Cultivating Affection and Values Amidst the Challenges of Goldenhar Syndrome

While guiding my son’s wheelchair along the sidewalk with his preschool class, I felt my heart race and my hands grow sweaty with nerves. I secretly hoped for rain so we could stay indoors, but the sky was clear. Upon reaching the playground, I parked the wheelchair and watched as William’s classmates escorted him to his seat. He patiently waited for me to join them before venturing out to join his friends. As we approached, I overheard some elementary school students from a nearby school making unkind remarks about him.

Ignoring the urge to confront them, I followed William around the playground as he enjoyed watching his friends play and greeting passersby. Despite the hurtful comments, he innocently walked past the boys who were talking loudly about him. My heart burned with indignation, but I refrained from confronting them, knowing my son either couldn’t hear or didn’t understand their words.

As we slowly circled the playground, I reflected on my anger. It wasn’t just the words they said; it was the ignorance and prejudice behind them. They didn’t know William’s struggles and triumphs—the countless hours of therapy, the near brushes with death, his infectious smile, his love for pizza and chocolate ice cream, and his determination to communicate through sign language.

They didn’t see him for who he truly was, beyond his physical differences. All they saw was a child with scoliosis, a missing ear, and other facial differences, and it made them mock and laugh. But they didn’t know him. They didn’t know his resilience, his kindness, and his love for life.

Realizing that they needed to meet William, I approached his teacher and explained the situation. Within minutes, arrangements were made for the classes to meet. The transformation in attitude was immediate as the children approached us with curiosity and kindness. They asked questions and interacted with William, eager to make a new friend.

This experience taught me that understanding and empathy can bridge the gap between differences. By giving others the opportunity to learn and connect, we can foster acceptance and friendship. Ultimately, it’s not the opinions of others that matter, but the love and acceptance we have for ourselves and each other.