November 23

11:38pm

The shenanigans that result from being delusional continued into the night last night, with Nathaniel ending up in special mittens at one point to prevent him from removing his IVs or his feeding tube or any of the other things that need to be attached to him right now. I read to him from 2am-4am, and that settled him down for a little while, but as soon as I stopped reading, he went back to the shenanigans.

By 7am I was done done done and despite all of the things in my head warning me that I should not be driving or for that matter walking, I managed to drive home and sleep in Pottstown for about 5 hours. Got a shower, ate some food, and made it back to the hospital in time for the back half of the football game. Nathaniel had at least lowered the intensity of the shenanigans by that point, so while I suspect that he would be mad as a wet hen that I left him in the hospital in that state, were he able to reason halfway clearly, I also suspect that were he able to reason all-the-way clearly he would’ve been glad I left.

I can’t say that the Eagles blowing a 21-0 lead against the Cowboys did anything for anyone’s mood, least of all mine.

After the game I packed up everything that was “anne sleeps here” type stuff and checked in to the Residence Inn across from City Hall for the next 38 days. I won’t be in the hotel every day — I still need to go home to do laundry and maintain the house — but this gives me somewhere to sleep where I can get away from 24 hour Nathaniel care. Because it’s not sustainable to sleep on the back of a sofa until he’s healthy enough to be discharged… and even then the hospital strongly recommends that we stay in town for a few weeks because he’ll still need almost daily appointments with the transplant docs.

It’s the first time I’ve “lived alone” since college.

The rest of this note next little bit is going to be about me.

When you’re neck-deep in alligators it’s really hard to figure out what you need. It turns out that asking for help is a skill that you have to develop and I did not.  I look around and think I don’t know, I’m up to my neck in alligators, I guess this is just how things are now. And every fiber of my Gen-X-white-girl-should-be-superman-“we don’t ask for help” being is shouting that even asking for help is something that shames me, my husband, and my family. I expect everyone to say “yeah, alligators, we’ve all got ’em, suck it up.”

So here’s me trying to be brave and say what we need.

1. Wawa gift cards.
2. Doordash gift cards.
3. Marriott gift cards.
4. People willing to spend a couple of hours sitting with Nathaniel so that I can go sit in the lobby and make phone calls or escape back to the hotel to talk to my counselor or whatever.  You have to be willing to do so even if he’s just lying there. You have to be willing to do so even if he’s delusional.
5. Someone who can come in and clean up his hair, beard, and nails. He’s been in the hospital for 6 weeks (48 days) exactly as of today and his hair and nails are getting a bit wild.
6. Someone to help me limit the time that I’m spending at the hospital. Bonus points if you’ve done this before. Help me figure out how to step away and not burn out even if “this is my job now” and “but I should always be there for him”  are true.

If you’re willing to come visit, please use the Visiting Nathaniel page to put it on the calendar.

If you’re willing to help in some of the other ways listed please check out How to Help.

Shout out to Nathaniel’s parents, who have visited as much as they’re able and also kept an eye on the house for us so that the bathroom remodelers can still get stuff done, etc.

Another shout out to the down-time slack crew who, any time i post “anyone want a side quest?” will hunt down printers, fans, glasses vendors, or any other oddities I need ASAP.

It’s after midnight so I’m going to take a shower and go to bed. I hope you all have peaceful nights not filled with alligators. We’re gonna get through this.