Shaina staggered out of bed last Friday. Over twenty-five years of parenting, we’ve guided our fair share of zombified children to their beds. We’ve never had to steer one from her bed. Had any of our other children lurched drunkenly into the living room, we might have chuckled. Not with Shaina.
My mind raced from zero to doomsday scenarios of what dizziness could mean for a child with a neurological disorder. Naomi’s face mirrored my concerns.
Oh, and did I mention that it was Friday?
Shaina has had too many Friday hospital admissions, so any pre-weekend medical anomaly sets our hearts racing. When her school principal heard Shaina wouldn’t be at school, she urged me, “Just don’t take her to the doctor today.” We all have SFESD: Shaina’s Friday Episodes Stress Disorder.
Friday or not, we had to take her to see a doctor. Was she wobbly because she had injured her foot and couldn’t tell us? Did she feel dizzy? Could it be a reaction to her new medication? An ear infection? Something more sinister, G-d forbid? We needed a professional assessment.
It turns out that the doctor had no more insight than us. Naomi left the consultation with a prescription for vertigo medication and a bemused “I really don’t know what it is.” Thankfully, the medicine seems to have helped, but we still haven’t uncovered the cause.
Rare diseases are that way. We’ve had doctors scratch their heads plenty. When Shaina suffered her most severe seizures, the paramedics couldn’t explain them. After her neurologist successfully controlled the fits, she was baffled by what caused them. She kept digging until she helped us get Shaina’s BPAN diagnosis, which no doctors in this country had seen, so that mystified them all. Throughout her medical journey, Shaina’s condition continues to perplex her medical team.
Parenting a child with a severe illness is challenging. Knowing our child’s condition will regularly stump her medical team is overwhelming.
And then I consider that it’s probably good to confound the doctors. They can’t explain those times she’s run around happily with oxygen levels so low she should have been on a ventilator. They’re not sure how she recovered from severe pneumonia without intravenous drugs. None of us knows how she smiles right after a blood test or where she finds her second, third and seventh wind to dance after she’s collapsed from exhaustion.
The reality of a disease that science knows little about is that it can surprise us at any time. Many of those bombshells have rocked our world. We’re hanging on for the day when the doctors rush to check their medical journals because there’s no scientific explanation for Shaina’s progress. And we pray for the day when they scratch their heads in amazement over the wonder cure they find for her.