A Mother’s Deepest Desire: If Only You Knew

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They gaze, point, and whisper behind their hands. Two little girls with ponytails and sweet smiles — the very embodiment of innocence — are unknowingly hurting my child. They might think their conversation is private, but it’s anything but. While he may not catch every word, we’ve learned that whispers can carry just as much weight as shouts, and stares communicate a thousand messages.

Due to his hearing challenges, it might seem less conspicuous if they openly talked about him. Instead, I see him cast a glance their way before positioning himself beside me. He uses me as his shield, turning his “bad side” against my hip, pretending not to notice the scene unfolding. My son was born with a rare condition called Treacher Collins syndrome, a facial deformity that sets him apart from other kids. These terms may sound complex for an 8-year-old, but he doesn’t need them to realize that he looks different. His unique appearance invites stares wherever we go. As his mother, I have become his safe haven, and I can’t help but shed tears while writing this. My greatest wish is that if people understood, things might change.

If you only knew…

You would recognize that he has a knack for organizing his toys that would make even the best organizers envious, yet he might wear the same pair of socks for days simply because it’s easy.

You would see that he asks me each night to tuck him in so we can pray — the only time he opens up about his difficult days, the cruel comments, and the weight of sadness he carries. When it’s dark, it offers him a comforting cover that hides his fears.

You would understand that he is not “slow” or mentally challenged just because he wears hearing aids and glasses.

You would know that his Grandma Ruth is his closest companion, taking him out for ice cream after every doctor visit; sometimes she even treats him to two scoops.

You would witness the anxiety that grips him whenever we step outside our comfortable bubble — our home, our neighborhood, our community.

You would realize that he is acutely aware of the stares, the pointing, and the whispers. He may pretend not to notice, but those moments are etched in his memory and often resurface at night when he confides in me, sharing his feelings through tears.

You would know that he has faced numerous medical appointments, procedures, and therapies. There was a time when he spent six weeks with his jaw immobilized after surgery, drinking his meals through a straw.

You would see how much he adores Halloween — it’s a day when he can blend in and feel like everyone else.

You would know that he wishes for a new ear, but we have to wait until his facial structure is ready for surgery.

You would hear him express his dream of becoming a builder like his friend, Mr. Tom.

You would realize that there are moments when he forgets he looks different, until someone reminds him, and that reminder often comes from someone nearby.

You would see that he is simply a little boy; he argues with his siblings, loves pizza and camping, and finds solace in a family that embraces him just like any other child.

If you knew me…

You would understand that when I tuck him in at night and he shares his struggles, I’m grateful for the darkness because it hides my silent tears.

You would know how thankful I am to have one child out of six who finds joy in organization and values neatness.

You would understand that, as his mother, I wish I could shield him from the hurtful glares, unkind remarks, and sadness that sometimes envelop him.

You would know that I carried wire cutters in my pocket for six weeks, just in case he choked while his jaw was wired shut.

You would see my frustration when he gets hurt, and how I have to restrain myself from retaliating against those who cause him pain.

You would realize that I often lie awake, torn between intervening and allowing him to navigate challenges independently. My instinct is to protect him fiercely.

You would know that each year, I speak to his classmates about his physical differences because many parents don’t consider teaching their children how to respond to those who are different.

You would understand that I don’t hold you responsible when your child teases mine; instead, I hope you seize the opportunity to teach your child that my little boy is the same on the inside as they are.

You would know that he once asked me why God didn’t give him an ear, questioning if perhaps God didn’t love him.

You would see that Joel has shown me that kindness is a deliberate choice — it’s never accidental. Kindness cannot be silent or neutral. It cannot turn a blind eye in the grocery store, ignore someone at school, or pretend not to see a child alone on the playground. It cannot sit back while bullying occurs and then justify itself by claiming it didn’t say anything hurtful.

Kindness does not whisper behind cupped hands in a grocery store. It acts; it reaches out. Kindness is not always the easiest path, but it is always the right one.

Kindness walks up to my son and asks, “Hey, want to sit with me?” because kindness is a conscious decision.

Summary:

This heartfelt piece explores the challenges faced by a mother of a child with a facial difference, highlighting the emotional toll of societal judgment and the importance of kindness. The author shares intimate moments that reveal her child’s strengths and struggles, advocating for empathy and understanding in a world that often overlooks the unique experiences of those who appear different.

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