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.
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 “—he was born with a rare disease, he has a profound intellectual disability, global developmental delay, and. 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.
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 asAnd 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...
Vaccinating him was difficult and required consultation with the children’s hospital’s pharmacist. Children with metabolic diseases cannot alwaysbecause 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.
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