Thank you for the thoughtful responses. Sara, I appreciated your raw real-ness.. parenting, especially now, especially with our kids.. its messy and it IS a constant battle of choosing the lesser evil, which feels like crap. Ive started conversations with my kiddo about taking necessary and controlled risks. Way back at the beginning I thought, if we just knuckle down and stay home, this can pass. But it is proving to be much less straightforward than that, and much longer lasting, and their while health (emotional, social, physical) has to be considered. So, we're taking small steps back into "the world", masked up and washing hands, controlling the risk when we can, embracing the ideas of harm reduction and accepting the things we cannot control.
I am not sure yet what will be our best path forward with regard to school. Our school district is going to start online and then plans to move to move to alternating weeks of in-person classes, with the option of attending 100% online. We'll probably continue to take it one step, one decision at a time.
Broad statements like, "kids don't get sick," I think are dangerous and mis-informed, and gloss over the kids like ours, that may be less likely to contract the virus, but are more likely to experience severe illness if they do. I feel like all the kids with special needs and differing risk factors have been marginalized, and forgotten about. So Im definitely being a bit loud, trying remind everyone I talk to about the subject, asking why we aren't hearing about what supports will be in place for kids with IEPs and 504 plans? What efforts will be made to protect the kids that ARE in a risk group? Why does it feel like the choice lies with the parents, with little concrete advice, and if those parents are working class, there is no framework for those families to still eat and pay for shelter while offering the supports and safety themselves? You can't dismiss us, who have seen doctor's cry because they don't know if our kid is gonna make it, who walk into an appointment to hear, "Well, your kid's doing excellent, but they could experience sudden death at any time, you need to know that." You can't erase that from my psyche and tell me not to worry, kids don't get sick. Not a decade later, not four decades later.
I think the most maddening thing, is not really having a single trusted source for information. Everyday, there's a new speculation, a new study, contradicting advice. Im reading it all. Since writing the first post here, my kiddo's cardiologist directed me to ACHA (Adult Congenital Heart Association).. my kiddo is a teen, so the advice is relevant, and focused on people who are, like them, in one risk group but maybe not another. I highly recommend giving them a read :)
Thank you again for the support and sense of community that comes with having a conversation like this one. The point is not that we should all be on exactly the same page, but that we share those differing perspectives and broaden each other's understanding, and feel heard. I appreciate it deeply.
With love and heart-hugs
~L
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lorissa
Eugene OR
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Original Message:
Sent: 06-25-2020 20:47
From: lorissa hughes
Subject: COVID precautions
Hello! I cant believe it took me so long to utilize this resource! I have a 13yo kiddo HRHS, post Fontan. They have been stable with only aspirin therapy for much of their life since the fontan, and while they struggle with some emotional/developmental issues, present pretty much as a healthy "normal" kid.
I am struggling daily to figure out what the right thing to do is during this pandemic. Im either being overly paranoid or not strict enough, depending on who you ask. My head is caving in. How much interaction and potential transmission is safe? Is it ok that Im going back to work in a bakery where 6 feet of distance is not always possible, where my coworkers are serving the public through a window? Should I put my kiddo on an airplane for regular summer parental visitation because its "not fair"?
I would love to know how others are coping with reopening, especially those who are younger.. in one risk group, but not another. How do you determine what is acceptable risk?
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lorissa
Eugene OR
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