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How My Child Responded to Someone Saying She Looks 'Normal'

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My daughter is brilliant, amazing, beautiful, funny and has a laundry list of medical diagnoses. She has: intractable epilepsy, autism, Ehlers-Danlos syndrome, a feeding tube and developmental delays. She is 6 years old and has six 3-inch, three-ring binders with all her medical documentation set up for every specialist, social service provider and regular doctor.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

My girl is sweet and charming and her smile is disarming. When meeting new people, she is either shy or boisterous (depending on her mood) and her disabilities are often invisible… at first. Inevitably, something happens that causes her daddy or me to share one or two of her special qualities. When the diagnosis is shared, we often are met with the phrase, “Wow, she looks so normal.”

I understand their misguided attempt to make me “feel better” by telling me how normal-looking my child is, but what should she look like? Would it be easier for people if all those with disabilities were colored purple? Or maybe had a star on their bellies like Dr. Seuss’s Sneetches? Why should my daughter’s lists of conditions make any difference in how you describe her? Because she has epilepsy, did her beautiful smile become somewhat tainted? Due to her autism, did her funny joke and belly laugh become warning signals?

And is there anyone anywhere who’s “normal”?

I have two older sons who are both brilliant and charming and wonderfully handsome, and I see both of them in my daughter’s eyes and smile. Are they somehow “less normal” for having my girl as their sister?

Yesterday, we were watching a parade. It happened to be my daughter’s first. At 6 years old, this was the first parade she was able to enjoy, and we were all basking in afterglow of catching candy and making it almost entirely through the parade without a meltdown or a seizure. A friend of a friend of a friend came over to tell me how normal my daughter looked and how they never would’ve known about her disabilities just by looking at her (patting me on the back as though congratulations were in order). As if on cue, my darling girl hoisted her shirt high over her belly and declared, “I am a shining star” (showing off her star-shaped tubie pad encircling her feeding tube).

My amazing, unique and fantastically wonderful, star-bellied Sneetch.

Originally published: July 27, 2015
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