They gawk, point, and whisper behind their hands. Two little girls with pigtails and cheerful smiles—an image of innocence—are hurting my child. I’m not sure if they think their conversation is private, but it’s anything but. He may not catch every word, but we’ve learned that whispers can carry just as much weight as loud voices, and that stares convey a wealth of meaning.
Due to his hearing challenges, it might be less noticeable if they simply spoke about him openly. Instead, I see him glance in their direction, then retreat to my side. He uses me as a shield, positioning his “bad side” against my hip, pretending he’s oblivious to the scene unfolding before us. My son was born with a rare condition known as Goldenhar syndrome, a congenital facial abnormality. While these terms might confuse an 8-year-old, he doesn’t need them to recognize that he looks distinct from other boys. And because of this difference, he is subjected to stares everywhere we go. As his mother, I’ve become his sanctuary, and it brings tears to my eyes as I write this. My greatest wish is that if only people understood, everything could change.
If you knew…
You would see that he has a knack for organizing a closet that would impress even the most seasoned home organizers, yet he’ll wear the same socks for days just for the sake of convenience.
You would know that he asks me to tuck him in each night for prayer, and this is the only time he opens up about his struggles, the tough days, and the hurtful remarks. The darkness of night wraps around him like a comforting blanket, concealing his shame and fears.
You would realize that he is not intellectually disabled or “slow” simply because he wears a hearing aid, glasses, and other devices.
You would know that Grandma June is his closest friend, taking him out for ice cream after every doctor’s visit; often, she spoils him with two scoops.
You would see the anxiety that grips him whenever we leave the familiar comfort of our home and community.
You would understand that he is not oblivious to the stares, pointing, and whispers. While he pretends not to notice, those moments are filed away in his mind, sometimes emerging in the stillness of night when he shares his feelings with me, often accompanied by tears.
You would know that he has faced countless doctor appointments, procedures, and therapies. At one point, he spent six weeks with his jaw wired shut after surgery, surviving solely on liquids.
You would see his excitement for Halloween, a day when he feels he can blend in with everyone else.
You would know that he dreams of having an ear, but we must wait until the bone structure in his face is ready for surgery.
You would hear him express his ambition to become a builder when he grows up, just like his friend, Mr. Andy.
You would know that sometimes he forgets his appearance until someone reminds him—and there’s always someone to do that.
You would see that he is just a little boy; he bickers with his siblings, enjoys pizza and camping, and at the end of the day, finds comfort in a family that loves him just as he is.
If you knew me…
You would understand that when I tuck him in and he opens up about his heartaches, I’m grateful for the darkness because my tears go unnoticed.
You would know how thankful I am for having one child out of six who can organize a closet and appreciates tidiness.
You would know that, as his mom, I wish I could erase the hurtful stares, the cruel comments, and the sadness that so often follows him.
You would know that I carried wire cutters in my pocket for six weeks, just in case he choked, as his jaw was wired shut after surgery.
You would see my anger rise when he is hurt, and how hard it is for me not to retaliate.
You would realize I lie awake at night, torn between when to step in and when to let him face challenges on his own. My instinct is to protect him fiercely.
You would know that I speak to his classmates every year about his differences because many parents don’t think to teach their children how to respond to uniqueness.
You would understand that I don’t blame you when your child teases mine; I just hope you take the chance to show that my little boy is just like yours on the inside.
You would know that he once asked me why God didn’t give him an ear, questioning if perhaps God doesn’t love him.
You would see that Joel has taught me that kindness is something we must actively choose. It can’t be passive or silent. It cannot simply stare in a grocery store or ignore someone in need. Kindness doesn’t take a backseat to bullying or negative remarks; it doesn’t hide behind the excuse of inaction. Kindness is proactive; it’s an action. It may not always be popular or simple, but it is always the right choice.
Kindness will approach my son and say, “Hi, want to sit with me?” because kindness is a conscious decision we can all make.
This article was originally published on Aug. 2, 2016.
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Summary:
In this heartfelt piece, a mother reflects on the challenges her son faces due to his unique condition, Goldenhar syndrome. She shares her hopes that if people understood more about her son, their reactions would be different. The narrative highlights the importance of kindness, empathy, and awareness in a world that often judges based on appearances. It serves as a reminder that every child deserves love and acceptance, no matter their differences.
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