Sunday, May 17, 2020

Cats

We've completed nine weeks of quarantine.

My brother brought over a pizza from a new-to-us place. New York-style. Fantastic. We have a new place. Even Ro ate two pieces and she's been on some sort of eating strike lately--we had to call her pediatrician to get a plan, and turns out it's just about her will over our requests that she nourishes her body. I don't mean to sound flippant, but the absolute hardest thing about this lockdown has been what is hardest for me at any time in life: Meals. The planning, the shopping, the prepping, the cooking, the HAGGLING, the cleanup, the putting away, the sometimes a week of eating rejected leftovers instead of what I am in the mood to eat. My mother loves cooking. I'm sure having always come downstairs to an unexpected, delicious, steaming meal has spoiled me for life. There is no way I could ever live up to her standards, and that adds a layer of disappointment over my entire process.

Last week, my brother had a video visit with the folks at Mayo Clinic. At the beginning of this crappy year, his longtime cardiologist group (the ones covered by his insurance) essentially told him they didn't know what to do anymore. The words "heart and lung transplant" were used. I don't know how much of this I've explained here already, but I have so little time to post that I don't have time to check, let alone edit.

Basically his OG cardiologist group has gotten good at treating newborns and children for their heart defects now, but not enough of them have lived to the age of 37: They don't really know what to do about all the fallout that happens after they've done those interventions. The Glenn, The Fontan, stents, Gore-Tex patches. Revising entire vessel systems. That stuff saves lives. But the body does what the body does to survive, and doesn't always follow the plan. There are long-term effects like cirrhosis of the liver caused by decades of imbalanced blood flow, venous pressures so great at times that his leg will spew blood like a hose. Oxygen saturation percentages that top off at 81 (the rest of us are close to 100 all the time). Arteriovenous Malformations (AVMs).They put him under for a cardiac catheterization, during which the vein specialist was going to use the sedation time to adjust something to help his leg.

He was the last patient in the cath lab on a Friday night. What broke my heart was when he came to. His first questions were: "Did they do anything?" then almost immediately, "How much is this going to cost me?"

They did not. And probably a lot.

The surgeon scheduled to do his cath had been called away for a family emergency, and the one who took his place did not feel comfortable with the vein specialist being in the operating room, so that was not allowed. They were not able to repair anything, but did discover a myriad of AVMs all throughout his chest. He came out to the lobby (where I put a meeting a I was conducting remotely with 90 people on it on hold) to show me a video of it. I didn't really understand what I was seeing, but I got what his face was telling me. They don't know what to do and the only way to figure it out is to make educated guesses and try it out. On my brother.

So he requested a second opinion. And then a viral respiratory pandemic hit. I'm sure I don't have to spell out in detail what a death sentence this thing would be for a person with a heart defect and only one functioning lung. This poor guy hasn't been out of his house more than a handful of times for more than two months. He's going insane. And our mutual giant employer announced that for people who can work remotely, work from home has been extended through to the end of 2020. I was overjoyed: We don't know what school is going to look like for Ro. Hell, we don't even know where she will be going to school--I hope to high heaven that I don't have to try and teach her Kindergarten. I can't even get her to color with me for more than 20 minutes. My brother's reaction was more like despair.

Mayo talked to my brother on Cinco de Mayo. I forgot that the big appointment was that day and forgot to ask him about it. We had another giant fight about it, because he felt that it should have been important enough to me to write down in my calendar. I swore I had. But what he doesn't understand is a) I have a couple more things going on than remembering his appointments, such a full-time job I'm struggling to maintain focus for, two children under the age of six who cannot do anything but watch tv unassisted, and often come in begging, "but will you watch WITH me?" and the daily eating rollercoaster we ride at least six times (if you count snacks) a day. Thank God for H being a hands-on dad or I would have lost my damn mind years ago. And b) ADD.

My brother does not have an easy life by any means, but among his ailments is not ADD. He doesn't understand that remembering appointments/being on time is a hallmark problem for us, so me forgetting his appointments must mean I don't care. Um…what? The kicker to that conversation was that he wasn't ready to talk about it the day it happened, anyway. If I had remembered and asked, he would have been snippy and likely would have called me annoying for asking so many questions. So I'm basically the bad guy in any scenario. I'm the only guy, too, because he doesn't want to tell Mom and Dad what's going on. It was agreed that I'm just not going to ask anymore and he can divulge whatever he wants, at the time he wants to disclose it.

This is the main reason I have become vicious in my online commentary about this Covid 19 crisis. I have watched this kid suffer for almost 38 years, putting on a brave face to the world, missing out on things he can't do because of this condition. Not using it as an excuse for ANYTHING (dude has an awesome job and somehow was put in charge of a bunch of other people?) while he could have very easily sat at home collecting disability, or at the very least get a handicap license plate. Acquaintences don't even know about this. The statistics are very personal to me. When people say 1 in 100, I immediately think: But what if that one person was a giant piece of your life? Is it really just ONE if something happened to them?

My brother and I are going on a road trip to Minnesota in June for Mayo to do some tests (cardiac cath awake!). They will be trying to adjust his blood pressures with medication--a little blue pill that has been coopted by guys who need a boost in the bedroom, but was designed for cardiac patients. They also said they don't want to pursue surgery that hard because he only has a one-in-six chance of surviving the blood loss from being cut open on the table, no matter how much donated blood we make available. My husband is a lifesaver, whose only comment was "Let me know when, so I know to request off." This guy will be 24/7 with these children, and then possibly longer if I have to quarantine myself afterward. The logistical gymnastics of caring for two small kids by oneself is an amazing and invisible feat, not well appreciated by the childless, and sometimes forgotten by those whose own kids can wipe their own butts.

My father, who has taken to roaming about the countryside because he cannot bear to stay at home for more than an afternoon, likes to show up with mango juice or croissants or bananas for the children. I needed to do about two weeks of chores yesterday when I get a text saying "I am coming to your house." We had next to no food in the fridge because we were planning on cleaning it before doing the monthly giant shopping trip. I complained about this to my friends, who said "just make some sandwiches and take the kids outside while you talk to your dad." Lovely idea. I didn't want to pile on the whining by saying we don't have any of the "right" kind of bread left and crafting some kind of meal wasn't going to happen in the 20 minutes it'd take my dad to show up. So I warmed up a hodgepodge of leftovers packed it into a picnic basket, insulated bag and another bag, and made my father wait in the yard for several minutes while I tried to corral everything. H was helping me find things, like the picnic blanket and cutting up carrots, but he wasn't going to go out there. He did clean the fridge instead, though.

We visited with my dad for about 45 minutes. He was sitting on a lawn chair under a tree, sort of wearing a surgical mask (even though I gave them about six fabric ones I'd been stealing time from sleep and work and children to sew) and us on a blanket. He kept wanting to hold the children, so I had to gently remind him we need to stay apart, and that I'm not wearing a mask because I don't go to public places about forty times a week like he does. Thank God I had tomato soup left for him because of course he doesn't eat meat on Saturdays. Then he left, I played bubbles and chalk with the kids and they went back in, leaving me to clean everything up and bring it inside. All of my plans for the day were pretty much shot. I came away from that thinking, okay my dad saw the kids but didn't get to hold them. He had to eat day-old soup awkwardly in a lawn chair. The kids kept wanting to go in to the front and for me to chase them, and didn't want to stand still and entertain my father. But I had to do so and also try and eat, plus feed them one of the 15 items on the blanket. I was exhausted and enjoyed very little of the entire experience. Why do we do these things again?

I want nothing more than for my kids to be able to go back to school. For them and for us. Every single day we leave them to toys and iPads and streaming services to work, then try to take them outside and play after 5pm but it rains? That disappointment breaks off a chunk of me, just a teeny little bit, every single time. Add to that all the other disappointments: It's Week 9 and people who thought I'd have sent them some masks by now are disappointed. I've been at this job almost a year and may never ever know enough to feel as confident as I did at the last job--the one thing I felt I was excelling at. Everything is a battle. The children want to control something but we have to find away to get them to eat. My brother wants to control the information coming out about his condition, but I have to find a way to support him and not neglect the responsibilities in my own house while also pretending to our parents that all is A-OK. My employer thought it was totally cool to bring me in, give me jacked-up access, some assignments and a list of near strangers from which I could "ask anyone on the team" and basically leave me floating alone in a lake of mostly empty cubicles to try and figure it all out by herself. I just need a win. Somewhere.

Each week, Andrew Lloyd Webber makes a production of one of his shows available on YouTube for 48 hours. I think about 11 million people watched "Phantom of the Opera." We have streamed every week except the concert of songs and Ro was intrigued by Phantom (and its mediocre sequel, "Love Never Dies"). I think it appealed to her obsession with all things Halloween because of their birthday. This week? Cats.

Apparently it's the third-longest running show (the first is Phantom). I have never understood what the big deal was about Cats, and after the movie version got shellacked last year, I've been even more curious. So we gave it a try.

H was out from the jump. Kash was out after about 10 minutes. Ro kept asking "what are they doing, Mom?" "Now what are they doing?" I didn't know. Thank goodness I had googled the "plot" or I would have had no idea what was going on. By hour 1, Ro was out. The costumes were cool, the makeup was awesome, the singing was good, the dancing was impressive. But I didn't get it. There's a magic about live theater that simply doesn't translate on screen--I totally get that, and this is a great example. My main impression was "wow, that is a lot of cats" and imagined having to wrangle or get them to do anything at all.

And in light of my current situation, it seemed appropriate to spend two hours trying to make sense of  the actions of twenty-some strange furry creatures, each with seemingly its own agenda; hard to follow, no clear plan, impossible to pin down. All the while wondering, "This? Is this it? Why does everyone love this but I don't get it? I'm sure I'm not doing it right."

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