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