They gawk, giggle, and murmur behind cupped hands. Two little girls with pigtails and adorable dimples—the essence of childhood innocence—are inadvertently causing pain for my child. They may think they’re sharing a private moment, but trust me, it’s anything but. He might not catch every whisper, but we’ve learned that hushed tones can be just as piercing as a shout, and the weight of a stare can be crushing.
Due to his hearing challenges, it might be less noticeable if they spoke openly. Instead, he glances at them and sidles up to me, using me as his human shield. He positions his “bad side” against my hip, pretending the scene isn’t unfolding yet again. My son was born with Goldenhar syndrome, a condition that alters facial structure. Those are big words for an 8-year-old, but he doesn’t need a dictionary to know he looks different from his peers. And because of that difference, he’s a target for stares wherever we venture. As his mother, I’ve become his safe haven, and the tears are flowing as I write this. My deepest wish is that if people understood, the world would feel a little kinder.
If you knew…
- You’d see that he can organize a closet so neatly it would make Martha Stewart envious, yet he’s perfectly fine wearing the same socks for a week just for the sake of convenience.
- You’d discover that he asks me to tuck him in every night to pray, and this is often the only time he opens up about his sad days and the harsh remarks he endures. The darkness acts as a comforting blanket, shielding his fears.
- You’d realize that just because he wears a hearing aid and glasses, it doesn’t mean he’s mentally challenged or “slow.”
- You’d know that Grandma Marge is his best buddy who treats him to ice cream after every doctor visit; sometimes, she even splurges on two scoops!
- You’d witness the anxiety he feels every time we leave the cozy confines of our home, our neighborhood, our safe space.
- You’d understand that he’s very aware of the stares, the pointing, and the hushed conversations. He might pretend he doesn’t notice, but he keeps a mental tally that often spills out at night in a torrent of tears.
- You’d know that he has faced countless doctor visits, procedures, and therapies. There was even a time when he spent six weeks with his jaw wired shut after surgery, sipping his meals through a straw.
- You’d see the joy in his eyes during Halloween, a day when he feels like he can blend in with everyone else.
- You’d know he longs for an ear but must wait until the bone structure in his face is ready for surgery.
- You’d hear about his dreams of becoming a builder like his friend, Mr. Tom.
- You’d grasp that sometimes, he forgets he looks different until reminded—because someone is always there to do that.
- You’d see that he’s just a regular kid; he bickers with his siblings, loves pizza and camping, and finds comfort in a family that cherishes him just as he is.
If you knew me…
- You’d know that when I tuck him in and he confides his heartaches, I’m relieved it’s dark because my tears are silent.
- You’d appreciate the gratitude I feel for having one child among six who can organize things and values neatness.
- You’d understand that, as his mom, I wish I could erase the hurtful stares and cruel comments from his life.
- You’d see that I carried wire cutters in my pocket for six weeks, just in case he choked while his jaw was wired shut.
- You’d witness my anger when he gets hurt, and how it takes everything in me not to retaliate.
- You’d realize I lie awake, torn between when to step in and when to let him stand on his own two feet. My instinct is to protect fiercely.
- You’d know that I take the time to talk to his classmates each year about his differences, because many parents overlook teaching their children how to respond to diversity.
- You’d see that I don’t hold any grudges when your child teases mine; my hope is that you’ll seize the opportunity to teach your child about the inherent similarities we all share.
- You’d know he once asked me why God didn’t give him an ear, wondering if maybe that meant he wasn’t loved.
- You’d learn that my son, Joel, has shown me that kindness is not just a passive quality; it must be intentional. Kindness cannot remain silent or neutral—it cannot pretend not to see a child sitting alone on the playground or stand idly by in the grocery store while whispers ripple through the aisles. Kindness is action; it’s a choice. It’s saying, “Hey there! Want to sit with me?” because that’s the right thing to do.
In summary, the wish of a mother is that people would look beyond appearances and understand the rich inner lives of children like her son. She hopes for a world where kindness prevails, and differences are met with compassion.