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Why I'm Worried About Rationing If My Child With Down Syndrome Gets COVID-19

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Social usefulness. That’s the term I keep coming upon in articles I read. Hospitals are preparing to be, or are already overwhelmed by patients who are severely ill due to the coronavirus. Hospitals need a plan for when the dreaded moment comes and they need to decide if patient A or patient B gets a bed, medication or a ventilator. In other words, who do we save?

This is terrible for any person, parent or not, to have to think about. As a mother to a son with Down syndrome, it’s absolutely horrifying. I’ve had to think about how I would plead my case if it came to that. What would I say? How would I argue that my son deserves to live as much as the other typical 3-year-old down the hall? It all comes back to the same argument for us as advocating parents. We want the same chances, the same opportunities for our kids. We don’t want them held back or pushed aside or put second simply because they aren’t seen as “socially useful.”

I don’t have the answer. I do not know what the best course of action is. I don’t know how the hospitals should deal with the terrible reality of dwindling supplies. I can only hope that whatever method they choose they see humans and not just labels. That they see my son and not his chromosomes. My child’s life matters just as much as your child’s life. And what a world we live in where I need to be prepared to argue that.


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This kid. Today he was non stop mom. We have to be touching at all times or apparently he self destructs.

A post shared by LEO & CHARLIE’S MOM ???? (@leonard.charleston) on

Originally published: March 31, 2020
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