It’s not a description I’d normally use to describe myself or my family. I’ve always been pretty conventional (in the way that Southern girls are conventional, with blush and lipstick). I made A’s all the way through high school, graduated valedictorian of my class, and went to college. I obtained a degree in electrical engineering, launched a career, met and married a man who did those same things, and purchased a home in the suburbs. I was driven. I wanted what everyone I knew wanted. I worked hard to achieve it.
Somewhere along the way, something changed.
It started with Sarah Kate.
Premature birth and a diagnosis of cerebral palsy stripped away my desire for corporate ladder-climbing and glass ceiling-breaking. I fell backwards into the world of stay-at-home-moms, and I liked it, but as much as I tried I never could quite become exactly like the other SAHMs I knew. Playdates weren’t the light-hearted chat fests that I wanted them to be; instead, they brought flashing signs and loudspeakers in my mind, announcing with bitter clarity that my daughter was different. Her achievements didn’t measure up to her peers. Over time, however, the differences became less pronounced. Sarah Kate was accepted on her merits.
Seven years later, the narrative that I had built – I’m Not Very Different – came crashing down. Suddenly, I was no longer the mom with the little girl who doesn’t walk well. I was the mom with two disabled children, and zero typical ones. Before Nathan, I was (mostly) like all the other moms. After, I became part of the counter culture.
I don’t care about the PTA; I care about the r-word.
In Ian Brown’s recent article about his disabled son, Walker, he asserted that
“Disability is by nature anti-establishment. It’s the very lack of so-called normal expectations, the absence of the possibility that Walker and I can ever ‘achieve’ much or even disappoint each other, that frees us from the established and the status quo, to be who we actually are with each other, rather than what society says we are supposed to be.”
How freeing, and how beautiful!
In many ways, Sarah Kate and Nathan are very similar. They have the same mouth and the same brilliant blue eyes. Neither of them has ever had an aversion to strangers. Both are happy, easy-going children. But in other ways, they are vastly different. Sarah Kate was just tapped for the gifted program at her school; Nathan will likely have some degree of intellectual disability. Sarah Kate has always been accepted and admired by her peers; Nathan may be rejected by much of society because of his distinctive physical features.
So I find myself in an odd limbo between conventionality and counterculturalism. Sarah Kate is smart and possesses the personality and drive needed to succeed in life. We’ll push her to graduate high school, go to college, earn a degree, and move to the suburbs. Poor balance and an inability to run probably won’t stop her from achieving any of those things, if she wants them.
Nathan, on the other hand, will always be unconventional. Regardless of his achievements, his very existence will run counter to the cultural norm. In a time when so many like him are no longer being allowed to exist, he will stand apart as a different type of person. In a world that has little patience for the imperfect, he will challenge the status quo.
And because we are his parents, Mr. Andi and I will also challenge the status quo.
And his conventional-appearing sister will be counter-cultural, as well.