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Do People Ask You What's 'Wrong' with Your Child?

Posted by on Apr. 20, 2016 at 12:12 PM
  • 8 Replies

People Always Ask Me What's "Wrong" with My Child


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The woman in the hardware store sauntered by our cart, stopped, and leaned in toward me. “Can I ask,” she said, “what’s wrong with your baby?”

No matter the circumstances, I always strive to educate instead of take offense, because I know in my heart that most people are genuinely curious about our daughter’s appearance and not meaning to be insensitive or cruel.

But we often hear the word “wrong” to describe our little girl.

“What’s wrong with her skin?”

“What’s wrong with her face?”

Or, simply, “What’s wrong with her?”

Our daughter Brenna (our second child and sister to our now 6-year-old son Connor) was born in 2011 with a very severe, very rare genetic skin condition called Harlequin Ichthyosis (har-le-kwin ick-thee-oh-sis).

It means that Brenna’s skin has difficulty doing the job that skin typically does, like protecting her from germs - leaving her susceptible to skin infections - or helping to maintain her body temperature. She can’t even sweat. To try to make up for this error in her genetic code, her body produces skin too quickly, leaving her with the appearance of a terrible peeling sunburn all over her body.

This lifelong condition affects our lives every day, sometimes very profoundly, as we try to care for our daughter the best we can, but also endure the public’s reaction to her looking different from other children.

One day, a family was behind us in the checkout line at the grocery store, and a little girl sat in her cart directly behind my daughter.

She pointed to Brenna and asked, “Daddy, why is her face red?”

Without hesitation, the father responded easily, “Because that’s just the way she looks.”

“Oh!” the girl said with a smile.

When we see those around us with visible differences, perhaps we simply need to remind ourselves that different and wrong aren’t mutually exclusive, and that a person is simply another human being. A different human being.

So her skin appears different than most, and it doesn’t function like most. But what we’ve come to realize is that our differences are what make us stand out in bold, beautiful ways. Our differences are what give our lives unique and fulfilling purpose.

You may first notice Brenna’s deep red coloring or her dry skin flaking off as she plays…but once you allow yourself to see beyond that, you’ll simply see a child enjoying life with her brother and her parents. You’ll see a child who loves animals and pizza, who loves to read, who throws temper tantrums, and who will jump at the chance to go to the library or the park.

Curiosity is a wonderful thing, especially for children who are learning about their world. But our curiosity about the way someone looks shouldn’t impede us from first recognizing their humanity.

Do people ask you what is 'wrong' with your child?

by on Apr. 20, 2016 at 12:12 PM
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Replies (1-8):
Linagma03
by Platinum Member on Apr. 20, 2016 at 5:04 PM

I don't because Lina doesn't look disabled. People have only asked me that question after getting to know me and Lina when they feel comfortable enough.  

jjamom
by Michele on Apr. 20, 2016 at 8:01 PM
1 mom liked this
I have had a few curious kids ask things like "why doesn't he talk right" or "why is he so small if he's 4"? (or whatever age he is at the time). But never "what's wrong with him"? I have gotten "Is he downs?" Which rubs me the wrong way because he isn't downs, he's a little boy who happens to have Down syndrome.

The little kid in the cart behind them reminds me of when my daughter was about 2 1/2 and we were in line at the grocery store. The cashier was a VERY dark skinned woman and my daughter asked me rather loudly why her skin was black. She truly had not ever seen anyone that dark before. I replied that it was just the color of her skin and the way God made her. Kids are just naturally curious when they see something or someone who looks different. But when adults do it, it's just rude.
golfqueen123
by Silver Member on Apr. 20, 2016 at 10:21 PM
1 mom liked this

Mostly kids because they can't understand why is isn't talking to them or why they can't understand him.  My son also was born with down syndrome.  No rude adults...........yet!!!

N.Carter2001
by Silver Member on Apr. 21, 2016 at 7:43 AM
I get asked why Jacob cant walk ? Then later they notice he dont really talk. He will say hi. But thats it.
LadyAmaranth
by on Apr. 21, 2016 at 11:43 AM

Not usually. My younger two are high functioning and its not noticeable until they are in certain situations.
My oldest most people notice but dont say anything unless I say something then they tell me they thought so.

michele115
by Michele on Apr. 21, 2016 at 5:49 PM
With down syndrome I see most adults know. The kids I have to explain he's a little rough but he's not trying to scare them he just wants to play. My bf's son is quick to tell anyone who will listen "that's my brother. He has down syndrome." He's very proud.
michele115
by Michele on Apr. 21, 2016 at 5:50 PM
Reminds me of when my niece came home from Sunday school and announced to us there was a chocolate boy in her class
Lol. She'd never seen a black kid.

Quoting jjamom: I have had a few curious kids ask things like "why doesn't he talk right" or "why is he so small if he's 4"? (or whatever age he is at the time). But never "what's wrong with him"? I have gotten "Is he downs?" Which rubs me the wrong way because he isn't downs, he's a little boy who happens to have Down syndrome.

The little kid in the cart behind them reminds me of when my daughter was about 2 1/2 and we were in line at the grocery store. The cashier was a VERY dark skinned woman and my daughter asked me rather loudly why her skin was black. She truly had not ever seen anyone that dark before. I replied that it was just the color of her skin and the way God made her. Kids are just naturally curious when they see something or someone who looks different. But when adults do it, it's just rude.
jjamom
by Michele on Apr. 22, 2016 at 7:37 AM
1 mom liked this
Haha! Kids.

My daughter had seen black people before, but this woman was SO dark that when she smiled, it was such a contrast with her teeth and I think my daughter was just surprised and curious. She was definitely one of the darkest people I have ever seen.

Quoting michele115: Reminds me of when my niece came home from Sunday school and announced to us there was a chocolate boy in her class
Lol. She'd never seen a black kid.

Quoting jjamom: I have had a few curious kids ask things like "why doesn't he talk right" or "why is he so small if he's 4"? (or whatever age he is at the time). But never "what's wrong with him"? I have gotten "Is he downs?" Which rubs me the wrong way because he isn't downs, he's a little boy who happens to have Down syndrome.

The little kid in the cart behind them reminds me of when my daughter was about 2 1/2 and we were in line at the grocery store. The cashier was a VERY dark skinned woman and my daughter asked me rather loudly why her skin was black. She truly had not ever seen anyone that dark before. I replied that it was just the color of her skin and the way God made her. Kids are just naturally curious when they see something or someone who looks different. But when adults do it, it's just rude.
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