In a replay of my Catholic boarding school days, I was pulled into the principal’s office at Savannah’s school on Friday. Not mincing words, the principal dead-eyed me and said, “Quite frankly, given your daughter’s medical condition, I’m shocked you’re not more on top of it.”
Looking for a short cut, I tried to re-use the medical forms from summer camp with the school and she was pissed.
Still her comment hurt, popping a blister of pain and frustration that had been festering since Savannah’s birth. Overwhelmed managing the endless doctors’ appointments, therapists and mounds of paper work, I had a breakdown then and there — the second day of school.
I tried to use the “single mom” card as an excuse. But, actually, I wanted to say to the granola principal: “You. Don’t. Get. It.”
Savannah is an enigma. She’s not wheelchair bound or displays telltale signs of mental or emotional delays. “She looks so healthy,” I often hear, which is true because I deliberately downplay the situation to prevent her from being labeled “THAT kid.”
I’ve known people, who upon visiting a dark Sesame Street set, are shocked to see Big Bird deflated and shoved in the corner. That’s not the affable bird they know and love. Likewise, I often feel if people could peek backstage into my life, they’d be equally horror-stricken.
I’ve raced through the streets of New York in a cab while Savannah had seizures in the back seat and watched a doctor force an IV into an infant’s head. I have an uncanny ability to stay composed in stressful situations, but later, during an entirely unrelated moment, will crack. I’ll go to pay a medical bill or catch the eye of another parent of a special needs child at the doctor’s office, and begin to cry.
Divorce, bankruptcy and alcoholism rates are high among parents of special needs children. Recently, a friend shared that mutual friends with a severely handicapped child are heavy drinkers. “They’re at the bar every day by 3:00,” she said.
Honestly, I don’t blame them, and my only hope is someone buys them a drink.