Shaina will often perch a pair of glasses on the tip of her nose and announce that she is a granny. It’s a super-cute reminder that reading glasses are for old folk. Only, I don’t laugh as much as I used to.
I’ve worn glasses ever since my third-grade teacher told my mom I couldn’t read the board. The eye doctor upped my prescription each year of my youth as I became increasingly short-sighted. In adulthood, my eyes stabilised, and my glasses strength didn’t change for years. Until recently, that is.
A few years ago, the optometrist condemned me to the world of the aged with a heartless: “I think it’s time for you to get Multifocals”.
“Who, me?” my mind scoffed.
So what if I lifted up my glasses to read Whatsapp messages or a sidebar Talmudic commentary? I was fine. Besides, I’d heard people complain that it was tough to adjust to mutifocals. Each time the eye doctor suggested the upgrade, I’d picture Shaina’s “granny” glasses pose and say, “Thanks, doc but I’m OK to lift my specs to read my messages”.
I caved in two years ago. On reflection, it was probably around when we received Shaina’s diagnosis. It took just a day to acclimatise to my new windows to the world, and I’ve never looked back. Nu, so I tilt my head up to see my phone and down for the horizon. Big deal.
Getting used to those lenses was easy. It’s the multifocals in my mind that are tricky. My mind, like my eyes, is naturally short-sighted. I quickly notice current challenges while the bigger picture is a blur. On the other hand, since Shaina’s diagnosis, I find that good times can be obscured by anxiety over the future.
When Shaina dances a jig in our living room, my heart dances. Her smile ignites mine, and her every achievement is thrilling. When parents of older BPAN kids share their struggles, my chest tenses up.
We’ve just completed a quarterly BPAN survey. These surveys assess the handful of children with this condition to help researchers find a cure. The sections that ask if she can read, balance on one foot or dress herself rub her limitations in our faces. We breathe gratitude when we can answer “no” to one of the reams of questions about severe medical challenges. Then the paralysing “what ifs” about the future hit, and I have to remember to change lenses.
Like my multifocal glasses, our minds switch between different modes of perception. On a good day, it’s best to focus on the now, on a tough one, to look towards a happier tomorrow. We can’t use the near-sighted lenses that only see physical challenges for too long. We need those lenses to manage Shaina’s medicines, eating challenges, therapies and doctors’ appointments. The thing is that they fog up with doubt and anxiety, especially after a doctor describes a depressing scenario.
Then it’s time to switch to hyperopic lenses that can see more than what meets the eye. They allow us to peer past Shaina’s physical challenges to see her glowing soul. We notice the joy of now without the blur of tomorrow. We glimpse the blessing of a pure soul that speaks in a language the body cannot enunciate.
We wouldn’t be able to manage Shaina’s needs if we only focused on finding the meaning in her journey. We’d never survive if we only saw the conspicuous.
The optometrist warned me that flitting back and forth between near- and far-sighted lenses could be tiring, even nausea-inducing at first. Ha! Those adjustments are child’s play compared to switching mind lenses as often as we do.