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.
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”?
