Two little girls with pigtails and bright smiles gaze at my son, whispering to each other while pointing. Their innocent demeanor belies the hurt they inflict on him. While he may not hear their words, we’ve discovered that whispers can carry as much weight as shouts, and stares can convey deep emotions. Due to his hearing challenges, it might be less noticeable if they simply spoke openly, but instead, he turns towards me, seeking comfort. He positions his “less favorable” side against my hip, pretending not to notice the scene unfolding yet again. My son was born with a condition known as Goldenhar syndrome, a complex term for an 8-year-old, but he doesn’t need to understand the terminology to realize he looks different from other boys. Because of this, we face stares wherever we go. As his mother, I’ve become his safe haven, and it breaks my heart to think about the world outside. My deepest wish is that if people knew his story, things might change.
If you knew…
- You would see his extraordinary ability to organize a closet, rivaling even the best home organizers, while choosing to wear the same socks for an entire week simply for convenience.
- You would realize he asks for nightly prayers, and in those quiet moments, he shares his worries and the hurtful comments he faces. The darkness becomes a comforting shroud, concealing his fears.
- You would understand that he is neither mentally challenged nor “slow” because of his hearing aid and glasses.
- You would know that his Grandma Lily is his closest friend, always treating him to ice cream after doctor visits—sometimes even two scoops!
- You would witness the anxiety that washes over him as we venture beyond our familiar surroundings.
- You would be aware that he is not oblivious to the stares and whispers; he merely pretends they don’t affect him. Those moments are etched into his memory, surfacing in the stillness of night and spilling over in tears and sadness.
- You would know that he has endured numerous medical appointments, surgeries, and therapies, including a six-week period with his jaw wired shut, relying on a straw for nourishment.
- You would see his joy during Halloween when he feels like everyone else and can blend in for a night.
- You would hear about his desire for surgery to fix his ear, but we must wait until his facial structure matures.
- You would learn that he dreams of becoming a builder like his friend, Mr. Tom.
- You would know that there are moments he momentarily forgets his differences until someone reminds him, as someone always does.
- You would see him as just a little boy—he argues with his siblings, loves pizza and camping, and finds solace in a family that loves him just as he is.
If you knew me…
- You would understand that as I tuck him in and he shares his heartaches, I’m grateful for the darkness that hides my tears.
- You would know how thankful I am to have one child out of six who appreciates organization.
- You would realize that I long to shield him from the hurtful gazes and cruel words.
- You would see how for six weeks, I carried wire cutters in my pocket, ready for any choking emergencies following his jaw surgery.
- You would sense my anger when he is hurt, and the struggle it takes to refrain from retaliation.
- You would understand my sleepless nights spent deliberating when to intervene in his conflicts and when to let him face challenges alone.
- You would know I speak to his classmates annually about his differences, as many parents forget to teach their children how to embrace diversity.
- You would recognize that I don’t blame you if your child mocks mine; I simply hope you seize the chance to show them how kindhearted my little boy truly is.
- You would know he once questioned why God didn’t give him an ear, wondering if perhaps he wasn’t loved.
My son, Joel, has taught me that kindness must be intentional and cannot be passive or silent. It cannot simply stare in the grocery aisle or ignore a lonely child on the playground. Kindness should never condone bullying or mean remarks, nor hide behind the excuse of not speaking out. Kindness is an active choice; it’s the gesture of approaching my son and saying, “Hi, would you like to sit with me?”
This article was originally published on Aug. 2, 2016.
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Summary
This heartfelt piece reflects on the experiences of a mother whose son has Goldenhar syndrome. It explores the misconceptions surrounding his condition, the emotional burdens he carries, and the joys of his daily life. The author shares her hopes for a more understanding world, emphasizing the importance of kindness and compassion in interactions with those who may appear different.