They glance, point, and murmur behind their hands. Two little girls with cheerful pigtails and sweet smiles—innocent on the surface—yet their actions are causing my son pain. Perhaps they believe their whispers are private, but in reality, they are all too loud. He may not fully perceive their words due to his hearing challenges, but we’ve come to understand that a gaze can be as hurtful as a shout.
My son, born with a congenital condition known as Treacher Collins syndrome, navigates the world with a unique appearance that draws attention wherever we go. To him, I’m a protective barrier, a safe haven. He positions his “less favorable” side against my hip, trying to shield himself from the judgmental eyes surrounding us. At just eight years old, he may not grasp the complexities of his condition, but he is acutely aware that he appears different from his peers.
If you understood…
- You would see his remarkable ability to organize his toys, rivaling the neatness of any professional organizer, yet he might wear the same shirt for days simply because it’s his favorite.
- You would know that he asks for my help to pray each night, a moment when he opens up about his insecurities and the hurtful comments he’s endured. The nighttime quiet allows him to share his heart without fear.
- You would recognize that he isn’t “slow” or mentally challenged; his hearing aid and glasses are just tools he uses to navigate life.
- You would understand how much he cherishes his Grandma Lucy, who treats him to ice cream after every appointment—sometimes even two scoops.
- You would see the anxiety that grips him each time we step beyond our familiar surroundings.
- You would know he is not oblivious to the stares, the pointed fingers, the whispers; he pretends not to notice, but those moments are etched in his mind and often surface in the stillness of night, shared with me in tears.
- You would learn about the numerous medical appointments, therapies, and surgeries he has endured, including a challenging period when his jaw was wired shut, forcing him to drink meals through a straw.
- You would see his enthusiasm for Halloween, a day when he feels comfortably disguised and blends in with everyone else.
- You would hear his dreams of becoming a builder, just like his mentor, Mr. Mark.
- You would know there are times he forgets he looks different—until someone cruelly reminds him of it.
- You would see him as a typical boy who squabbles with his siblings, enjoys pizza, and finds solace in a family that loves him unconditionally.
If you knew me…
- You would understand that when I tuck him in at night, I’m relieved the darkness hides my tears as he reveals his struggles to me.
- You would appreciate that I am grateful for the unique qualities he brings to our family, especially his knack for organization.
- You would realize my deep desire to shield him from the hurtful gazes and comments of others.
- You would know that for six weeks, I held prescription wire cutters close at hand, just in case he choked following his surgery.
- You would witness my anger when he is hurt, my instinct to protect him fiercely battling against the need for him to learn resilience.
- You would see me speak to his classmates every year about embracing differences, as I believe it’s essential for children to learn empathy and understanding.
- You would know that I don’t blame you if your child inadvertently mocks mine; I simply hope you seize the chance to teach kindness and acceptance.
- You would hear his innocent question about why he was born without a full ear, believing for a moment that it meant he wasn’t loved by God.
Through my son, I’ve learned that kindness is a choice—one that cannot be passive. It requires action and bravery. It cannot simply observe from the sidelines or allow bullying to go unchecked. True kindness approaches my son and says, “Hello, would you like to join me?” because kindness is a conscious decision.
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In summary, understanding the challenges faced by children with differences, and the heartfelt wishes of their parents, can foster a more caring and inclusive society. It reminds us all that kindness is a powerful tool that can change lives.