They gaze, point, and murmur behind their hands. Two little girls, with their pigtails and charming smiles, embody innocence yet unwittingly wound my child. Perhaps they believe their whispers are private, but in truth, they are anything but. Although he may not catch every word, we have learned that soft voices can resonate just as strongly as loud ones, and gazes can convey a multitude of messages.
My son, who faces hearing challenges, might not catch what they say, but he feels their scrutiny. He turns to me, taking his place at my side. He uses me as a barrier, positioning his “bad side” against my hip, pretending the scene doesn’t exist—yet again. My son has Goldenhar syndrome, a congenital facial condition that brings with it a unique set of challenges. While these terms may be complex for an 8-year-old, he comprehends that he appears different from his peers. His distinctive features draw attention wherever we go. As his mother, I serve as his sanctuary, and writing this brings tears to my eyes. My greatest wish as a mom is that if people truly understood, things might change.
If you were aware…
- You would recognize his talent for organizing a closet with the precision that would impress even Martha Stewart, yet he may wear the same socks for a week simply for ease.
- You would learn that he requests me to tuck him in at night to pray, revealing his heart only during this sacred time—when darkness envelops him and masks his fears and sadness.
- You would realize he is neither mentally impaired nor “slow” due to his hearing aid, glasses, and other equipment.
- You would know that his best friend is Grandma Lily, who treats him to ice cream after every doctor visit, sometimes indulging him with two scoops.
- You would witness the anxiety that grips him whenever we venture outside our home, town, or community.
- You would understand he is not oblivious to the stares, pointing, and whispers; he feigns ignorance, yet these moments are etched in his mind, resurfacing in the quiet of night when he shares his pain with me.
- You would know he has endured numerous doctor visits, procedures, therapies, and interventions. There was a time when he spent six weeks with his jaw wired shut post-surgery, subsisting on meals through a straw.
- You would see his joy during Halloween when he can blend in with others, wearing a mask that conceals his differences.
- You would learn he dreams of having a new ear, but we must wait until his facial bone structure is ready for surgery.
- You would hear about his aspiration to become a builder, just like his friend Mr. Tim.
- You would recognize that he occasionally forgets he looks different until someone reminds him, often in hurtful ways.
- You would see him as just a little boy, engaging in sibling squabbles, relishing pizza and camping, and ultimately finding security in a family that embraces him just as he is.
If you understood me…
- You would know that as I tuck him in and he shares his heartaches, I find solace in the darkness because my tears remain unseen.
- You would be aware of my gratitude for having one out of six children who values organization and neatness.
- You would know that, as his mother, I long to shield him from hurtful glances, unkind remarks, and sadness.
- You would be aware that I carried prescription wire cutters for six weeks, just in case he choked, given the state of his jaw post-surgery.
- You would see my anger bubble when he is hurt, and how I struggle to hold back the urge to retaliate.
- You would understand my sleepless nights spent contemplating when to step in and when to let him stand on his own—my instinct is to protect him fiercely.
- You would know that each year, I speak to his classmates about his physical differences; many parents overlook the importance of teaching their children to embrace diversity.
- You would recognize that I don’t hold you responsible when your child teases mine; rather, I hope you seize the moment to show how my son shares more similarities with yours than differences.
- You would know he has questioned why God didn’t give him an ear, wondering if perhaps God doesn’t love him.
Through my son, I have learned that kindness must be deliberate, never accidental. It cannot be silent or neutral; it cannot ignore a child sitting alone or dismiss bullying and mean comments. Kindness cannot whisper behind cupped hands in a grocery store. It is a verb, a choice. Kindness reaches out to my son and says, “Hi, would you like to sit with me?”
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In summary, the journey of parenting a child with unique challenges is filled with lessons on kindness, empathy, and the need for understanding. My son, like any other child, deserves love, compassion, and acceptance.