Last night as Edgar sat perched in his favorite kitchen chair working on his homework, he considered what he had done over his busy weekend. He colored in boxes for “Went Shopping” and “Played Outside.” Then he marked the box “Was Sick.”
I asked him why he checked that particular box as there wasn’t a single moment throughout the weekend when Edgar appeared to me to be sick.
He said, “Well, I had some seizures this weekend, so that means I was sick.”
And I stopped–as I find myself so often doing–in my tracks, struck by the magnitude of what he just uttered. Edgar knows the words “epilepsy” and “seizure,” and he knows he needs to take medicine twice a day; but never once have any of us termed him “sick.”
But that’s how he perceives himself–as sick.
And yet he’s not. He runs; he plays; he goofs around; he eats; he sleeps; he does his homework. Sometimes he has seizures, but this doesn’t make him “sick.”
And I realized at that moment that all the work I plan to do in this arena–to advocate, to educate, to demystify–needs to start with my son.
Because this is what epilepsy looks like in Edgar Farias . . .
Anything but sick.