Hoo boy howdy. This rabbit hole we’ve fallen down sure is a doozy. Does anyone else feel like they’re walking around in some strange dream state? And that you’ll wake up at any moment?

That’s pretty much how we’ve been feeling for the last 3 1/2 years, so you’d think I’d be used to it by now. Alas, it’s not really something you get used to – when your whole concept of “reality” gets turned upside down, I don’t think you ever fully adapt.

Several folks have written to check in on us – there have been so many offers to help bring groceries or supplies, and we’re so grateful.

Here’s the update: We’re fine. Like, actually a little better than fine sometimes. We have enough food to eat. Our jobs are stable and remote-able. Conor has the devices he needs to engage with his teacher. We’re able to go to the River and get outside. We can safely distance with our families for visits in the front yard. We’re not even getting on each other’s nerves too much.

Y’all. Privilege. We’re dripping in it.

So on the one hand I’m totally aware that this is not stressful for us and yet somehow IT IS SO STRESSFUL. What is that about?

I guess, to be fair, the virus itself makes me anxious. Preston has a couple of hunks out of his lungs and is about to go on chemo that will effectively wipe out his immune system.

Oh yea, I forgot the cancer update: (1) Scans last week were OK – everything grew a little, but we expected that because he was off chemo from Dec 15- Feb 7. (2) Labs are GREAT and his liver function has improved. This is due (we’re pretty sure) to switching to a vegetarian diet. That will require a post of its own. (3) They are changing his chemo from “ol faithful” 5 FU to Irinotecan (or “I run to the can” as it is not-so-affectionately called). He won’t be on the pump which is a welcome shift, but this new drug will do a number on his immune system and he might lose his hair.

The doc assures us there are still tools in the toolbox – this is a good thing. As long as he’s tolerating the chemo OK, we’ll keep doing it. Hopefully, they’ll come up with some rocking new drugs to wipe it out in the next year or so. (you know, except that they have shut down the trials in a lot of places due to COVID – in writing this I’m starting to realize why I’m feeling stressed.)

I do want to share some of the things I’ve learned over the years in dealing with a crisis situation. Maybe it will help you with something you’re trying to work on in your house.

1. The internet is not helping you feel better.
2. Be aware of your privilege, but let yourself acknowledge the suck. (I feel this deeply – the conflict between “We are so lucky” and “GODDAMMIT” is something I’ve been sorting through since P was diagnosed and it’s even magnified in this time.)
3. Glennon Doyle said this recently on Instagram and it was a good refresher for me – “TV time is peace time.” When P was first diagnosed, Conor watched a lot of cartoons. Turns out, he is fine. (PS have you read her new book, Untamed? I thought it was great.)
4. You don’t have to be productive. But if it helps you, you should be. Lean in to the self care that works for you. For me, it is not bubble baths and pedicures. (IK) It’s feeling useful and making things. I sleep better on the nights I create something rather than get lost in the interwebs.
5. Some days you’ll suck at doing the things you’re supposed to do. That’s OK. Feel the things!
6. The internet is not helping you feel better. (I say this with love and as someone who has looked on every message board, twitter thread, and facebook group trying to understand what a progression of colon cancer looks like. IT DOES NOT HELP. The internet cannot provide the glimpse into the future that you seek.)

And here are some things the child-life specialists we’ve worked with over the last couple of years have suggested and I think they apply now more broadly:

1. Kids absolutely 100% know what’s going on. It was true when C was 3 and Preston was diagnosed. Tell them the truth. Help them understand the science of it, or at least a good analogy. (But Why: A Podcast for Curious Kids had a good episode that helped Conor understand a bit better.)
2. Watch out for a fear that they are “carriers” or could infect their loved ones. There is a lot of messaging coming out about how kids could be inadvertently sharing the disease.
3. Help them understand that people getting COVID didn’t do anything wrong to get it. 99% of it is just bad luck.

There you go. You didn’t really need my advice, but if you’ll see my previous statement about what makes me feel productive and safe, it’s about creating and feeling helpful, so here we are. Thanks for letting me practice some self care today.

Hang in there loves.