We roll our bags down the entry hallway of Children’s Hospital, past a colorful abstract butterfly mural. We’re here for a scheduled overnight—no rushed admission, no immediate accident or illness, no heart-thumping clutch of fear. We deal in the long and slow, in measured stretches of medication carefully calibrated—dripped in by IV monthly, spooned in by dropper-full twice daily, cut in half and swallowed in applesauce Monday through Thursday, and injected on Friday.
We’re not the family in the waiting room rocking a wailing baby, pacing, talking on the phone in tears. We’re not the stoic mom holding the tiny four-year-old boy with half a shaved head.
We’re the ones with the kid who looks just fine. Julianne sits in the waiting room with headphones on, reading her book serenely. While stress ebbs and flows around her, she appears untouched.
We’re the ones with the girl who’s proud she can pronounce the ten-syllable mouthful Ju-ven-ile Der-ma-to-my-o-si-tis (JDM) correctly when she’s first diagnosed two years ago at 7 1/2. We’re the ones with the statistical anomaly: one of only two to three kids per million get JDM, an inflammatory disease of the skin, muscle, and blood vessels. (And we wonder why we can’t beat these odds when it comes time for school raffles or radio-show call-ins or even a lotto ticket.)
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