My Biggest Wish as a Mom Who Sees People Stare at Her Child's Differences


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, but truly it’s not. He may not hear what they are saying, but I have learned that a whisper can be just as loud as a yell, and staring speaks volumes.

Because he’s hearing impaired, 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 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 different from other little boys. And because his face looks different, he is stared at everywhere we go. And 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 you knew…

If you knew… 

You would see 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 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 having a hearing aid, glasses and other equipment does not mean he has an intellectual disability.

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 he is not blind to the stares, the pointing, and the whispers, but pretends he doesn’t notice. 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 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 dinners 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 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 there are times he forgets he looks different, but then someone reminds him.

You would see he is just a little boy, who 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.

little boy in the pool

If you knew me…

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

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

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

You would know he 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, 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 always a choice.

Follow this journey on Ransom for Israel.


Find this story helpful? Share it with someone you care about.


Related to Goldenhar Syndrome

My Child Who Looks Different Will Stare at Other Children Who Look Different

My kid stares and whispers at other children who look different… Yes, my child who looks different will stare and whisper to me about a child who also looks different. This to me is proof that we as parents hold the power and responsibility to teach our children value and acceptance for others. When my child points out or [...]

What I Learned When I Adopted My Son With Special Needs

Stacey’s son, Joel. “They called me monster,” Joel whispered with tears streaming down his face. My heart twisted and I was angry. Actually, it wasn’t anger, it was fury — fury at the 7-year-old students who had crushed my son. My sweet Joel was starting to realize how very different he looked. Born with Goldenhar syndrome, he [...]

6 Weeks Ago, This Teen Wanted to End Her Life. Thousands of Strangers Changed That.

Breanna Mendoza is an eighth grade student at Dutcher Middle School in Turlock, California. She was born with Goldenhar syndrome, a birth condition that can cause facial deformities as well as vision, hearing and breathing problems. Breanna has dealt with bullying most of her life. Six weeks ago, she was forced to stop going to school because of violent [...]

I Won’t Succeed Despite My Autoimmune Disease. I’ll Succeed Because of It.

I had mononucleosis for four months before the doctors began testing. My deterioration was quick. Within a week, my walk was reduced to a torturous hobble and my arms weighted my shoulders. I was too tired to read, too stiff to chew and swallow, and my fingers were so unyielding that they stood on edge [...]