“Tired of lying in the sunshine, staying home to watch the rain… you are young and life is long, and there is time to kill today.” Time by Pink Floyd

I think we can all agree upon needing an escape into the ethereal world of Pink Floyd these days. Though, to be fair, I wouldn’t quite recommend “breathing in the air” unless you happen to be certain that the air is, in-fact, safe. So sit back, and get cozy. It’s been a while.

While our soundtrack ebbs and flows through the beaten up speakers in our home, synchronizing our journey these past few years, we retain our corporeal imprints on our favourite chairs, and watch the dust float through the rays of sunshine beaming down through our front windows. We’re still here. Breathe.. breathe in the [dusty] air..

Our hero has grown taller, her hair has grown longer, her seizures went away, and then they came back, and then they went away again. We have been coronated with strands of grey on our weary heads and gifted with lines of poetry around our tired eyes; a reminder of all the shared laughs we once had. It’s strange how only three years can feel like ten when you’re sitting at home and watching life through the windows. On the flipside, it can be frightening when ten years have flashed by and you really can’t account for how they’ve been spent. Sometimes pressing pause on life’s soundtrack to embrace the silence can be a worthwhile endeavour.

How did I get here? I ask myself, as I realize it’s been three years since I last updated this blog. How did I push myself to figure out how this website works, or to remember how to put the words together to make them meaningful? I don’t honestly know. Most days, it’s a struggle to get out of bed, to open the curtains, to fight the blinding sunshine that burns my eyes and lasers wretched migraines into my brain. Though one would never know this of course, as the reflective office windows on my exterior won’t permit you to gaze inside at the worker chained to the desk, wondering when it will be time to go home. My office is closed, but the work continues on inside, nonetheless.

Of course, I am not the only one here behind these windows, serving time at this excruciatingly slow pace, and I don’t need to look very far to find the next sad tale of suffering and turmoil. “We are all going through these unprecedented times”, or some reasonable facsimile of that general statement which is being pushed around nearly everywhere. I fully appreciate that time speeds up or slows down for no one, and right now, the only way to get through the fire is to walk through the fire. So walk with me, while I share with you our view from this side of the glass.

When we were in the early days of a virus on the horizon, I knew things wouldn’t be great for us. Pepper requires assistance all throughout her day for feeding, for toileting, and for mobility. She needs an advocate, a communicator, a warrior to be by her side, carrying her through the world. Navigating the virus in a congregate setting, where our hero may risk exposure, automatically set off alarm bells on our risk meter. HER HANDS TOUCH EVERYTHING! She is not mask tolerant, nor does she understand why a mask is necessary. She holds her breath when getting dressed. I can say with full confidence, that I was relieved when school shut down after March break, this would be my opportunity to keep my girl, my life, safe. When September loomed large and Pepper’s seizures had returned, I put myself back in time to the early days of her seizures when we had 9-1-1 ready to dial after a series of powerful back to back seizures. I was reminded that her seizure threshold lessens when she’s ill, and we’ve had several close calls with her immune levels being low. I remembered how it felt to be in the emergency room, helpless while the doctors and nurses rushed to her bedside and cranked up the oxygen into her mask. Then I panicked thinking about how this would look in a crowded ER with chaos around every corner and oxygen masks in use on each struggling patient. Would we even be allowed to stay with her? What if we physically could not be because we too were sick? Who then speaks for her? Who then speaks for us? This is a nightmare I do not want to live with my own two eyes. Ever. Nor should you.

Without a plan in place for special needs students across the province, the
decision was basically made for us. Starting September, our children would stay home. We would work from home, and I would pray each morning when I woke up, that I would have the strength to manage through another day. A high stress job, and caring for a child with extraordinary needs, AND having both kids at home AND having to supervise their learning, while trying to navigate a deadly virus, while navigating my own personal health issues, while trying to remain CALM?! It’s time for someone to speak with the Manager! This pandemic is in need of cancelling!

Since September, we have fallen into a routine with school and work, and have been able to control Pepper’s seizures thus far with increases to her medication. She has been seizure-free since the end of November. We’re still praying each morning that we find the strength to manage through each day, and we continue to watch the dust fall through the rays of sunshine pouring in through our windows. We’re still carefully curating our soundtrack.

I don’t pretend to know what it’s like for those in more dire circumstances; for there are many out there who are going through something worse. It is not lost on me that I reminisce about our story as someone who is employed, who has been able to purchase groceries for my family and take care of, as well as check in on my loved ones of advanced age. I am grateful for these small mercies. I acknowledge and appreciate that those with less opportunity most definitely deserve my compassion and kindness. They too are staring out onto the deserted streets while seated on chairs sagging from their bodily imprints. We’re all: “Shorter of breath, and one day closer to death.”