A Mother's Biggest Wish: If You Only Knew

by Stacey Gagnon
Originally Published: 
Stacey Gagnon

They stare, point, and whisper behind cupped hands. Two little girls with pigtails and dimples — the absolute picture of innocence — and they are hurting my child. I’m not sure if they think it’s a private moment they are sharing between them, but truly it’s not. He may not hear what they are saying, but we have learned that whispers can be just as loud as a yell, and staring speaks volumes.

Because he has hearing difficulties, it would probably be less obvious if they just openly spoke about him. Instead, I see him glance their way and then take position at my side. You see, he uses me as his shield. He places his “bad side” against my hip and pretends that he doesn’t see the scene playing out, again. My son was born with Goldenhar syndrome, a congenital facial abnormality. These are big words for an 8-year-old, but he doesn’t need them to be able to understand that he looks very different from other little boys. And because his face looks different, he is stared at everywhere we go. As his mother, I have become the safe spot for my little boy and I cry just writing this. My biggest mommy wish is that if people knew, things would be different.

If you knew…

You would see that he can organize a closet in a way that would make Martha Stewart jealous, but will wear the same pair of socks for a week because it’s convenient.

You would know that he asks his mother to tuck him in to pray each night, and that this is the only time he will talk about the sad days, hard times, and cruel remarks. The dark is a safe blanket that helps hide his shame and fears.

You would realize that he is not mentally handicapped or “slow” because he wears a hearing aid, glasses and other equipment.

You would know that Grandma Weezie is his best friend and takes him for ice cream after every doctor appointment; sometimes she buys him two ice creams.

You would see the anxiety he feels whenever we leave the comfort of our home, our town, our community.

You would know that he is not blind to the stares, the pointing, and the whispers. He pretends he doesn’t notice, but they are catalogued in his mind and sometimes brought out in the dark of night and poured out to his mommy in a torrent of sadness and tears.

You would know that he has had countless doctor appointments, procedures, examinations, therapies, and interventions. At one point, he spent six weeks with his jaw wired shut after surgery, drinking his meals through a straw.

You would see how much he loves Halloween because that is when he looks like everyone else and can hide in public.

You would know that he wants an ear, but we have to wait until the bone structure in his face is ready for the surgery.

You would hear about how he wants to be a builder when he grows up, like his friend, Mr. Ben.

You would know that there are times he forgets he looks different, until someone reminds him. Someone is always there to do that.

You would see that he is just a little boy; he fights with his siblings, loves pizza and camping, and at the end of the day finds security in a family that treats him no differently than others.

If you knew me…

You would know that when I tuck him in and he shares his heartaches, I’m glad it’s dark because my tears are silent.

You would know how grateful I am to have one child out of six that can organize a closet and values neatness.

You would know that, as his mother, I wish I could take away the hurtful stares, cruel comments, and sadness.

You would know that I spent six weeks carrying prescription wire cutters in my pocket in case he choked, because his jaw was wired shut after a surgery.

You would see that I get angry when he is hurt, and it takes everything in me not to retaliate.

You would realize that I lie awake and agonize over when to intervene and when to make him stand on his own. My instinct is to overprotect.

You would know that I talk to his classmates every year about his physical differences because many parents don’t think about teaching their children how to respond to differences.

You would know that I don’t blame you when your child makes fun of mine; I only hope you take the opportunity to share how my little boy is the same on the inside as yours.

You would know that he asked me why God didn’t give him an ear, and thought that maybe God didn’t love him.

You would know that Joel has taught me that kindness is intentional, never accidental. Kindness cannot be silent or remain neutral. It cannot stare at the grocery store, ignore at school, or pretend it doesn’t see a child sitting alone on the playground. It cannot take a backseat to bullying or mean remarks, and then hide behind the justification that it didn’t say the mean words or poke fun. Kindness does not stand in a grocery store and whisper behind cupped hands. Kindness is a verb; it’s an action. Kindness is not always popular or easy, but it is always right.

Kindness will walk up to my son and say, “Hi, want to sit by me?” because kindness is a choice.

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