Whenever my son starts to run a fever, it sends me into a panic.
He is one of those people you hear about in the abstract but maybe not one of the people you know. The term they use to refer to people like him is “medically fragile”—he was born with a rare disease, he has a profound intellectual disability, global developmental delay, and autism. This doesn’t necessarily mean he’s “in poor health”—rather, it means there are underlying, complicating factors that could take something that seems innocent and simple—like a childhood fever—and turn it into something really bad.
Which is why being Isaiah’s mom has always necessitated a hyper-vigilance matched only by the collective paranoia of parents everywhere in the beginning, when this pandemic hit first. Remember the early days of lockdown, punctuated by dried and cracked skin from the excessive hand washing and worrying at the first sign of a sniffle or a cough? I’ve always had to fret like that, wondering what common thing may lurk around the corner to hurt him. I’ve always had to wonder how the challenges his own body faces each day may prevent him from recovering from some typical childhood illness. We’ve been worrying for nearly eleven years, without interruption.
So when the pandemic started and we had to mostly stay home and be super cautious when we did go out, and we had to assess and reassess risk—it was nothing new.
And it was nice—heartwarming even—to see people and parents actually come together with a common goal of keeping a community healthy. Staying home, worrying, adjusting, educating. When people posted little signs saying “We’re in this together!” and secured neon hearts in their windows, I really thought we were in this together. That collectively, we wanted to avoid this virus and we were willing to make sacrifices—even for each other—for that to happen.
But 20 months later the novelty of community care—the thing I truly think kept us safer through the first few waves—wore off, just as Omicron came crashing in.
And then our collective narrative shifted: while previously we’d been worrying about mortality and money, lamenting the plight of the elderly and reading the saddest stories about saying goodbye to ailing loved ones on FaceTime, suddenly, and somewhat defiantly, we’ve taken the stance that we’ve done our part, gotten our shots, worn our masks, and now it’s our turn to live again.
It doesn’t help that we’re being bombarded with the message that Omicron is mild, from media, social media and even reports from our own friends and family who have gotten it.
But where does that leave kids like Isaiah?
In his Emergency Medical Care Plan (a document we carry as a PDF on our phones, just in case) which is set by his seven different specialists, he is required to be automatically admitted to the hospital and placed on IV fluids at the onset of any unexplained fever. In the car, on the way to the hospital, we are supposed to contact the metabolic disease specialist on-call to let them know we will be there. Fevers are scary for us, because they could signal a dramatic and life-threatening shift in his underlying condition: liver failure. As far as Covid-19 goes, if he is symptomatic, the same rule applies. Hooking him up to IV’s and watching him be strapped to various machines for monitoring? Well, that doesn’t sound mild to me. It sounds like a nightmare.
Through painstaking effort consulting with his teachers and therapists and doctors, never-ending decision-making (canceling plans, isolating, moving long-awaited appointments) and a whole lot of luck fueled by a whole lot of privilege, Isaiah has managed to thwart Covid-19 so far. But the odds are undoubtedly stacked against him, and other medically fragile kids.
Vaccinating him was difficult and required consultation with the children’s hospital’s pharmacist. Children with metabolic diseases cannot always receive vaccines because there may be ingredients present that they cannot metabolize. Still, the benefit for us far outweighed the risks, but that is not the same for so many of our fellow rare disease families.
Isaiah also cannot always mask properly, he doesn’t understand physical distancing and one of his preferred self-soothing techniques is to touch his own mouth and lips, repeatedly.
So it does feel very much, at this stage in the pandemic and with this highly transmissible variant that we are simply racing against time and waiting for the inevitable: it’s true, we probably will all get it.
As a family, we continue to hold him at the centre of everything—we have to. Every decision—to go tobogganing, to walk into a store, to increase exposure in the slightest of ways—has him primarily in mind. While I am accustomed to an ongoing level of stress and worry as his mom, this newest variant, coupled with the shift in attitudes and the claims of mildness, have made the worry almost unbearable. We are trying our best, as a family of six, to get through each day as positively as possible, but we are all worn down.
This week, all four of our kids, Isaiah included, have returned to school in-person. Another decision that was not easy, but one that feels very necessary. Isaiah’s lack of access to education over the last twenty months has caused significant regressions in his skills and behaviours. Watching him lose those bits of progress has been absolutely devastating and knowing that he may never recover them is even worse.
As the parent of a kid with disabilities, I already know most people don’t care about kids like mine, but seeing it—hearing people flout Omicron’s alleged mildness—has really shown me how easily people can disregard a life. It shines a light on the other pandemic—the one of ableism—that has been raging in the background. And unfortunately there’s no vaccine for that one.
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