Friday, June 05, 2020

it's a beautiful, messy, unfair world, after all

Tonight I put two little boys to bed.

I rubbed their backs, I stroked their hair, I watched their eyes flutter open, I reassured them I was not leaving when they complained. And when they were all the way out, I backed away slowly and closed the door behind me.

One of those boys is my two-year-old son, whom I carried for nine months and watched being lifted out of my own belly via the reflection in the chrome of the overhead lights in the operating room. The other is my 37-year-old brother, whom I prayed so hard for every single night in the months before I turned four because I was lonely and wanted a baby to play with but not one who would want to share my dolls.


So much has happened in two weeks. Two weeks? Has it been three? Has it been 47? What is time anyway? I feel like I've lived two years of events in the last three months. Normally I'd spend a lot of time trying to find words to describe how I feel about Covid19 coronavirus (hella terrifying), quarantine (confusion and struggle), #BLM (it's about damn time), murder hornets (only THIS much less terrifying than Covid), looting (opportunists coopting a movement) and 45's government (I'll never find words for that one). There aren't enough stolen wee hours of the morning for me to write coherently about what has happened, so I'm just going to start at the beginningish. It's almost 3am. Be kind.


The Thursday before Memorial Day, May 21, was already a bad day. It was the anniversary of the birth of the first baby who didn't live. She would have been seven this year. I had already been feeling emotional and lashing out at people for a few days because the 21st is just the date on the birth and death certificate; my water broke at the office on the 19th and I agonized over hearing her heartbeat every eight hours for two ungodly days of torture before actually delivering her into a world where her little lungs had no chance of providing a breath. And the ordeal lasted for months afterward. It's like my soul activates some sort of emotional muscle memory of that experience around this time, and this year was exacerbated by the anxiety and hopelessness of the pandemic. My mother brought over a card and a gorgeous cream-colored orchid plant. My brother showed me that he had a reminder on his phone of her birth date and mentioned he had a headache.

My brother wanted us to come over on Saturday and grill out with him. I was not loving the idea, what with the death sentence that coronavirus would be for him and lifelong agony it would be for me if we were the reason he'd gotten it. It rained. My brother somehow manages to get his way, so he fired up the grill on Sunday and we made our way over there. He was on the deck with my mom, all masked up and distanced. My dad wasn't feeling social so he was kind of off on his own in the corner. H, the kids and I were all down on the lawn, running around--them playing with a slew of new toys their Nani couldn't help but buy and us in chase, trying to get them to take some ever-loving bites of their hot dogs. Ro actually loved the steak her uncle prepared, so she ate the heartiest meal she'd had in a week. The only time my brother wasn't grumpy was when he was shooting water at the children and making them scream in fake terror and run for cover. I kept telling H that it seemed like my brother was mad at me. Then I saw his hands trembling when he was putting the corn on the cob onto his fancy grill. That was odd. Apparently that headache--a dull pain that he'd never really had before--hadn't really subsided and he was taking Aleve every day to unsuccessfully make it go away.

The next day was the actual Memorial Day. It was the day we all, including my folks and brother, were supposed to have been getting on a plane to Orlando to visit what we'd been telling the children was "The Beach" (Hint: It's Disney World). My brother had planned every single teeny detail as only a Manager of Project Managers like himself is capable of doing. I was mostly interested in finding out what is so special about the Dole Whip and whether we'd survive the rigorous timetable. Sticking to a schedule with two children under six is a nightmare and I'm not going to lie: the 8:30am breakfast with Belle was a joke--we can't even get them out of bed by 8:30am and Orlando is an hour ahead! Ro was going to have the first haircut of her life there. You read that correctly; her hair comes down past her little behind, just like Rapunzel. Not a single one of the seven of us has ever been to this magical place where everyone is supposedly always happy. But it's closed, along with nearly every other place there is these days.

My brother decided to see his primary care physician in a video visit on Tuesday. He kept calling while I was on conference calls. During the quarantine, this kid has taken to calling me on average of six times a day. I get it: He is lonely and bored and a little bit miserable. I can't always answer, but have always had this nagging feeling when I send him to voicemail that it's going to be a bad call that I've ignored. Most of the time he just wants to shoot the shit between his own meetings or when he's tired of tv or when he wants to see the children. But this time the follow up text was "I'm going to the Emergency Room."

What he thought was a tension headache was actually a brain bleed.

After that initial cat scan, they admitted him directly into the ICU. No visitors. No information. My parents were losing it, I was freaking out and he was in there, all alone.


One thing I may have not made clear about my brother is that he is a charmer. I cannot tell you how many people met him once and have remembered him forever. He has been working this voodoo on our parents and me since he entered this world, and somehow generally gets his way. I'd say a lot of that is because it really doesn't hurt us to make whatever he wants happen, and the precariousness of his health condition is kind of always hanging around like a lingering cough: This could be the last…do you really want that to be the last…? So while he was dealt a really shitty hand at birth, we have tried to make the rest of the stuff that is in our control a little less shitty. And perhaps he might take some of that for granted, because he doesn't know any different. That said, he works very hard and has made a name for himself. He's actually a bunch of people's boss. It's strange, because to me he's still a three-year-old running around in Smurf undies.

He knows someone who knows someone who knows the CMO of the hospital where he is admitted. They gave him permission to have ONE person be able to come and visit. And two days into his stay, the CMO came to his room to greet him and tell him so, personally. That very special allowed visitor is me. I feel incredibly guilty, because no other patients get visitors, but not guilty enough to stay home and leave him to suffer alone.


The ICU room is new. There's a giant flexible, shiny silver tubing coming in then out the back that is LOUD. AS. HELL. It creates negative pressure to continually suck out all the air in the room, thereby also sucking out any airborne germs. This is handy in the time of Covid19, and I'm sure by design. But the sound measures 65 decibels. And there is no break. You can't even hear yourself think in there, let alone dream about listening to a podcast.

The first couple days my brother was in ICU. Then they moved him to a sweet new room with lovely windowseat with a view of the nearly empty parking lot and two (!) televisions in it. During those idyllic days, I'd bring him a different meal each evening and rub his head while he watched reruns of "Chicago P.D." or "30 for 30" on ESPN (that Lance Armstrong was something). He could walk and talk and generally function fine, but the headache wasn't going away. They kept doing CT scans to check on the bleed. I managed to be there one day when the neurosurgeon was there, and they explained that in a normal patient, they'd take them to the operating room and "evacuate" the blood and fluids immediately to relieve pressure on the brain, but because my brother has a whole lot of extra stuff going on already, that would be risky. Mr. I Do What I Want had his three-chambered heart set on surgery.

Things have not been easy for this guy, as I have described in many a post here. But he has always been battling through it and coming out on the other side. This time is different. We are hearing a defeatist tone in his voice and exasperation and exhaustion like we'd never heard before. His best friend is expecting a baby and didn't reach out as much during this quarantine, which really hurt. I try my best to be there for him, but children need to be bathed, work hours need to be completed to pay the mortgage and I do need to sleep once in awhile. That unavailability hurts, too. Both of us. He really hasn't even gotten over breaking up with the longtime girlfriend, m, and kicks himself every day for having left her seven years ago. I don't feel right commenting on that relationship, but something needs to happen to give him the closure he needs because it seems like he just can't give anyone else a chance. He kept saying, "I'm tired. I am so tired of fighting. What is the point?" I would gently start listing the names of people who were reaching out with concern, love prayers and support. I don't think that did anything but annoy him, but he put up with it.

I had really been hoping the inflammation and old blood would magically go away without surgery (I read it can be reabsorbed by the body, but that wasn't going to happen in less than a week). They were set to operate on the morning of June 2, this past Tuesday. The delay was to accomodate several days of administering platelets and medication to encourage his blood to coagulate. Those would combat decades of blood thinner use he needed to keep his heart working without blood clots.

In those days before the procedure, he called EVERYBODY. Longtime buddies, out-of-touch friends and all his exes. Even m. He shared seven years of pent-up feelings with her and she was rightfully taken caught off guard. They are not getting back together. I don't think he got the closure he wanted. Whether he got the closure he needs is yet to be seen. Either way, she's been texting me for updates every day, along with his legion of fans.

The night before the surgery, several of his coworkers, his boss, my folks, my godparents and friends met up in the parking lot of the hospitals with signs and a Zoom meeting (where more work people joined) in a little rally. It was one of the sweetest things I have ever seen. My dad, who doesn't have the patience to sit through a feature-length film, drew a person holding a giant heart that said "You are special" and underneath was "Love Mom and Dad" and colored it all in--with thin-tipped markers. That must've taken forever. My mom made one with sports on it and something like "Get better very soon." We made a giant sign of taped-together easel paper that says "We [heart] you" in giant letters. Ro is obsessed with half purple/half pink hearts and is very proud of having mastered the shape. His nurse has taped those signs to his walls.

On the day of surgery, I was allowed to be there for the prep but told in no uncertain terms to GTFO as soon as he left for the operating room. He was irritated that he wouldn't be put all the way under but given "Twilight" sedation for the procedure. He was fiercely advocating for himself, and it made me very proud. They didn't know if he could survive general anesthesia. Which was ok, because apparently with brain stuff, most of the time the patient is kind of awake. His anesthesiologist turned out to have been in the same high-school graduating class, and they were catching up on classmates while she started his arterial monitoring line. Then they made me pack a bag with anything he might need for several days, take the rest of his stuff, and they wheeled him away. Six hours later, after the procedure, getting off the ventilator, the recovery room and the initial CT scan, I was let back in to see my baby brother with a drain sticking out of his head.


Pain is something you can build a callus to try and bear. This guy has had eleven open-heart surgeries, so this process is not unknown to him. But messing with the brain is messing with his head. He says the pain is so intense that only morphine makes him feel "a little better, but not a lot." They decided not to bore into his skull because they can get just as effective results from a subdural (under the skin) drain placement as making holes. But the surgeon told me that normally when he cuts into a patient's head, he'd see white from the bone. With my brother it was all red, no white. And because he has been taking Coumadin for almost all of his life, his blood doesn't want to clot and stop bleeding.

The evening after the surgery, I felt like I couldn't get any answers. They couldn't find his bag, with his phone or chargers in it, and I would be damned if I left before I secured a means to be in contact with him. It was finally located, somewhere, after they'd tried to tell me I had walked off with it that morning. I kept asking questions and the three nurses assigned to him kept putting me off, saying I had better talk to the neuro team. My brother was very very out of it; he wasn't going to be a reliable narrator, and worse, he kept asking me if he was going to die, and saying he didn't want to die. That broke my heart but gave me hope that he does have the mental strength to fight. At home, my parents were going out of their minds with worry. I finally cornered his lovely night nurse outside the room and was trying to make sure she had my phone number when he started yelling at me from inside the room. He didn't want me talking to his caregivers out of earshot. He wasn't giving me answers and they weren't giving me answers, and I had an entire crew of concerned people asking me questions. I promised not to talk to anyone without him as long as he GAVE ME INFORMATION. The next day, he called me and put the neuro surgeon on the phone while they were there doing rounds.

During the operation, they were able to remove a lot of blood. The surgeon said it came "pouring out like motor oil." There was new bleeding as a result of the procedure, which is what they feared when they had recommended against surgery. Instead of one spot, where the original spontaneous bleed had been, it was bleeding at the top, bottom, left and right of his brain. There was output coming from the drain, but the CTs they did 3, 6 and 9 hours after showed he was stable. They were pumping him full of coagulating medications, which "are very potent" and also not good for his heart. He also isn't making many platelets, so they've continued to give him those as well. At this moment they have to choose between the brain and the heart and they are focusing on the brain, even though the hematology team and cardiology team are watching him closely, as well. Encouraging the blood in his head to clot could also lead to bad clots that could get to his heart. This is all very disheartening. And unfair. The neuro said he's doing very well thus far and it'll be 72 hours of hell but then they expect things to get better. They do not anticipate any issues, but they will be ready if any arise.


I'm writing this about 65 hours post-op. It's 4am. On the day of the surgery he was in a lot of pain but still managed to make a "that's what she said" joke to a nurse putting in a particularly difficult IV. Yesterday they let him have more than a wet swab in the mouth, then ice chips. Being able to eat gave me hope that they didn't think they'd need to do emergency surgery on him at any moment. I brought him Gatorade, Sour Cream & Onion Pringles and ginger ale. He had red Jell-O. Today he got another stable CT, so they let him sit up at a 45-degree angle, walk around the unit with his nurse and use the bathroom. But he called me several times in misery, saying his entire body hurt from lying in these crappy beds for more than a week (he's starting to get not-open sores from the bed) and that he felt like an 18-wheeler had run over him, backed up and run over him again. He requested a Dairy Queen Heath Bar Blizzard, which was the only thing he ate today. If he can have a couple more stable CTs, they might talk about removing the drain. There has been no new output since yesterday.

When I was there tonight, rubbing his forehead and the pinching the bridge of his nose as I have been doing for 3-5 hours every day they let me in to try and get him relaxed enough to sleep, I noticed one of his eyes was suddenly kind of bloodshot, and there was swelling on the left side of his face. I told the nurse, who paged the neuro team, and they did a stat CT. As they were pushing him out the door, he tells a nurse, "DO NOT LET HER LEAVE." I don't have a good way of finding out what the radiologist said, and no way to know how he's doing tonight. That sucks.

Each day gets harder and harder to leave him. Yesterday at 9pm, I was trying to explain that I still needed to go to the grocery store and he was begging me to stay. I'm starting to see why my mother would spend weeks and sometimes months in the recliner at his side, only leaving to use the bathroom or a quick shower in the nurse's locker room. When I told her I won't drink anything after noon to try and prevent having to use the bathroom at the hospital, she said that's what she did during those times after his surgeries. He would ask her, "do you really have to go to the bathroom?" And I can picture exactly how hard that must've been for her. What I can't imagine is what it's like for her now, when she's stuck at home and can't be there. I've explained that I'm representing all of us, and when my hand is on his forehead, it's all of our hands on him, trying to make him feel the love we and the dozens of people on multiple continents who are praying for his recovery are sending. It's cheesy, but it's what's getting me through it. That and repeating all the prayers I can remember from CCD.


The thing that I just can't shake about this, and life in general, is just how damn unfair it is. This guy was born with his heart on the wrong side, missing a left ventricle. He has one lung, liver cirrhosis, a spontaneously spewing left leg and now a brain that might randomly bleed. The news that this ordeal could very easily happen again next week, next month, next year is probably eating away at his hope for a "normal" life. That said, he IS alive, and his brain is capable of still coming up with smartass answers to my questions even after the trauma of surgery. The same can't be said of so many other people who didn't have a chance.

H is constantly reminding me that life isn't fair. That I have a warped sense of justice, as if it's actually possible, when it just isn't a lot of the time. Deep in my heart I know this, yet every day it continues to poke me, aggravate, make me irate.

Today people at our company took a knee for eight minutes and forty-six seconds in memory of Floyd George, who was murdered by law enforcement in Minneapolis. Cities have been on fire in the last week. Looting, rioting, marching, protesting. To try and start to fix hundreds of years of injustice, somehow. People's anger had nowhere to go. At least anger can lead to some kind of action, and possibly a resolution. To me it is infinitely preferable to despair.


Kash just woke up, ran to our room and found I wasn't there. When he woke up his father, he said, "Mommy went to the hospital." I went up there, gave him some water, walked around holding him and sang the full roster of baby songs all the way from "She'll Be Comin' 'Round the Mountain" to "Hush Little Baby" until he relaxed enough to fall back asleep. I was able to comfort him, stroke his hair and rub his back. Six miles away my brother is suffering alone, with only the bloops of the monitors and the hum of the negative pressure fan to lull him to sleep. I hope he's dreaming of seeing Disney World.

Sunday, May 17, 2020


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."

Friday, May 01, 2020

six weeks tomorrow

Everyone keeps talking about “the new normal.” What does that even mean? I’m getting into online feuds with people in a mommy facebook group who live in Indiana and let their kids run around together in the neighborhood and think that there’s more danger in breathing “humid air” while wearing a mask than wearing one and trying to keep the numbers of infections from climbing. In New York city, they’re running out of room for the bodies. There aren’t enough refrigerated trailers and warehouses to hold them all. My friend Sol’s husband and children had to say their goodbyes and last rites to their uncle over Zoom (non-Covid cause of death). The family is being difficult about social distancing during the upcoming mass and burial. As if losing a brother isn’t hard enough. Nurses are being thanked for holding the iPad in one hand and the hand of a dying loved one in another so their family can be there when they pass. I cannot describe the raging fire of anger in my heart toward the people who think this is a conspiracy or made up by the media. Journalists are being furloughed, their pay cut, or simply being let go left and right, while people are so thirsty for information—and they NEED reliable sources. This is the kind of moment I’d always imagine having happened in the past that we were supposed to have learned from. Obviously we didn’t. The president is tweeting about all sorts of nonsense and looking for people to blame while having dropped the ball. Also denying statements made on camera. I’m so disheartened about society. 

At home, my resolve is wearing thin. I hope I can find the patience to be kind to my children, who have been on some sort of bizarre hunger strike—even things they love, like “nani cereal” they are not eating. We are trying so very hard, but it feels like we are failing at everything. 

It took me five weeks, but I made several pleated/tie-masks and got two rolls of stamps to try and mail them to our family and drop them to friends. I am disappointed in myself. I have seven boxes of fabric, not to mention two spools of twill tape (which I mailed to CC’s bff who is cranking out masks like nobody’s business). I just don’t have the TIME. H bought me this cool plexiglass/wood gadget to make holding the fabric down to rotary cut easier. I’ll admit, I wondered when he thought I was going to have time to use it, but dang has that thing come in handy. I have about 350 sets of masks measured out and cut up. I am making cotton straps and ironing them into bias tape—easily the most time-consuming pattern, but much more comfortable to me. Because of course that’s how I would do it. Hopefully I can get them made and to the people who need them, as Illinois has been requiring a mask to be out among the people starting today. 

There just isn’t enough time in the day. The poor children are left to entertain themselves for long stretches of the day, while we desperately try to maintain focus to get the bare minimum done at work. I have never in my life looked forward to a weekend more desperately than I have for the last five weekends. Their schedule is out the window, flown through a woodchipper and scattered in the wind. Kash takes naps later in the evening (like 5-7:30 or 8p), which is nice for trying to cook/clean up the tornado of toys, but then he’s up till 1 or 2a. I have a daily meeting at 8:30a—thank God not on video—and we are HURTING. It’s like the guy spinning plates. But instead of being able to do it, we just let them fall and dig more plates out of the cupboard. Ro has started writing her S and N backward all of a sudden and does not want to practice. We are still paying Ms. A to try to get her through this until the government money comes through (no sign of it). She’s going to hold our spots and credit us when things open back up again. She is worried about losing her livelihood and even commented that she might consider cleaning people’s houses… Ms. A always has loved a flourish of drama. 

My folks are still going into work. I worry so much for them. My mom works at the hospital and just masks up and sanitizes. Both she and my dad go to the store SO much more than H or I, who have only gone out four times in nearly six weeks. My brother can work from home but is losing his damn mind, alone in his big old house. He’s watching a lot of tv. 

We don’t have time to do the basics, let alone watch all the “it” shows, like “Tiger King” on Netflix and God knows what else. I’m feeling a lot of FOMO about that. At some point, though, I have to just accept that I simply cannot do all the things. I have a lot of anxiety—there is chest tightness that has been coming and going since February and my monthly cycle has shortened quite a bit. My hair is falling out. I feel like a jerk complaining about any of this in light of people losing their livelihoodS and even their loved ones. 

H’s employer has asked they take a PTO day once a week for at least the month of May (they, as my company, are hemorrhaging money despite being insanely busy because of the COVID-19 virus). Top brass are all taking 15-20% paycuts at both places (our CEO is taking a 50% cut, which still leaves him getting $5.5M, so I don’t feel too sad for him), and they’re going to cut nonessential workers’ pay gradually and let people go in the negative with their PTO. My significantly larger company lost $168M in the month of March. I’m having flashbacks of all my layoffs and panicking. Our plans to sell our house are on hold. I don’t know how the heck I would be able to online educate my kindergartener in the fall when I can’t even get her to practice writing her letters. 

These are strange times, which I’m sure I will draw from for the rest of my life. I hope that I will look back and think “I did the best I could with what I had,” but likely it will be more like “dumbo, why you squander all of that precious time?” 

Thursday, April 09, 2020

day 21

DISCLAIMER: I generally don't drink, but right now I'm sipping Pinot Noir from a mug my brother got me that says "You are doing a fucking great job." And today has been one of the better days.

Last night I went out for the first time in 20 days. I fashioned a mask out of a "POW' "BAM" comic-style bandanna we got during a "superhero" themed giant project from 2016* and two hair ties. I went to the grocery store and bought a month's worth of groceries, then stopped at the daycare lady's house and picked up some preschool materials and gave her a check. It just feels like the right thing to do, especially because we have a taste of what it's like to wrangle these two maniacs all day long--God bless her for managing to take care of (and teach) 12 of them.

The store was a weird experience. There were masked people, unmasked people parents with wandering teenagers, couples trying to decide which box of Triscuit to get and a pregnant employee making flower arrangements. There was no milk, but lots of bread. There was zero toilet paper, but plenty of meat at the deli counter. There was no flour but lots and lots of veggies. These are strange times. There was a weird, Twilight Zone feel to the entire experience. My cashier was young and had on gloves but no mask. I realized very quickly what an error it was to get the "smallesh" cart but managed to pack it full. At check out I had to get a bigger cart to actually get the stuff to the car. And a lot of it ended it up kind of dented by the time I got home.

I didn't like it. I'm hoping to go another 20 days until I have to leave again. All these years, I've been telling myself I'm an extrovert, but I suspect a) I was an introvert all this time?!?! b) H has converted me or c) I'm getting old. Get off my lawn. This quarantine really hasn't bothered me one bit. We don't take these children anywhere anyway, and while I can make conversation with a lamppost, these last few days it takes more out of me than it ever did. I love not having to do my hair or put on makeup and the TIME SAVED not having to plan to drive somewhere? #priceless. I sent cc a meme today that said something to the effect of "I haven't been late to anything for a month!" Except I'm the last one to log into my 8:30am work standup call every morning...

Working with small children has been so challenging. I wish I could say that I've totally figured out this new job, but if we are keeping it 100, I really haven't. A few weeks ago when they were playing Headbandz Jr., Ro told H "You're much smarter than Mommy." That shiz cut deep, little girl. Later, H gently reminded me that nothing goes unnoticed around here, and likely my constant self second-guessing has been absorbed by these little sponges. So now I have to keep my abject panic about how much I have yet to figure out about this job even after ELEVEN months to myself. Fake it till you make it? We will see when I have to take call next week for the first time.

I think it's safe to disclose at this point, two glasses of wine and almost 15 since I started this blog, that I used to be a journalist, working at a pretty-giant-named newspaper. And now I work in healthcare IT. Even though this was never our intention, so does H. We have a very unique perspective of seeing this whole COVID19 thing play out without being on the floor anymore (which I was for several years). Holy cow, it's like I'm Elaine on Peppermint Schnapps.

Anyway, we are hearing about things that are terrible and worrying SO much about our colleagues, friends and loved ones. Someone on my team is working on documentation for "expired patients," allowing for nurses and physicians to document details of all kinds. And H is working on reports on how many COVID19 cases (and at what level) for his organization. Sobering, at best. Yet there are still people gallivanting around, meeting up in secret, going on playdates, because they can't stand to stay home with their Internet and their fridges full of food. It makes me stabby.

This thing could be a death sentence for my brother, and the very idea of that brings me to tears. The poor kid hasn't seen a soul in almost a month; he's doddering around his three-bedroom house all alone. I just want to go over there and give him a hug so badly, but I'm 90% certain the 'Rona has has passed through this house. There is no way in hell I want to expose him to it. He needs to re-up his Coumadin prescription, but his APN says he needs to get PT/INR labs done first. So I'm trying to find an N95 for him to wear for the lab test.

Last night we also tried to bake our own bread, in this curvy type of Italian loaf pan. It was, as Paul Hollywood says in the Netflix series 1 of The Great British Baking Show, "Calling this a disaster would be an insult to disaster." It was hard as a rock. We left it out on the stoop for the wildlife, and it went untouched overnight. What a waste of five cups of flour and two packets of yeast. I should stick to cooking vaguely directed meals that don't require any precision.

I have been obsessed with the Apple Music radio show "Rocket Hour" with Elton  John. He is a lovely deejay and plays all kinds of music. I'm hoping the exposure will allow my children to appreciate all kinds of music. They'd rather listen to the Frozen 2 or Mickey Mouse Clubhouse soundtracks.

Sleeping on the floor in the kids' room has been eye-opening. Kash will roll right out of his toddler bed, onto the floor and not wake up. Ro will have entire soliloquies in her sleep (she got that from me). Sleeping on the floor is hard on the hips. I generally end up sneaking into the twin bed with her or cramped up in the crib-turned-toddler bed with him. I haven't had a good night's sleep in years, so it's kind of moot. But wow, am I not functioning well. [insert shrug emoji here]. I am hoping so hard that my employer is not basing continued employment at productivity stats.

H is feeling much better, but of course the pessimist in me suspects this is a fakeout before he feels a lot worse, as has been reported about this damn "THE SICKNESS," as Ro calls it. I have never before truly appreciated how much he does around here with the kids. But after this past week where I'm trying to work full-time and stay-at-home-parent full-time with H laid up in bed, I kind of feel like I'm either the biggest charlatan in the world, or maybe I can handle more than I thought. I am praying even harder that no one else gets this thing.

I'm blathering, but you know what, I've never buzzed posted before, and any editing I had done to my posts is out the window, because two people under the age of 5 will only play with kinetic sand for so long.

I don't know what I'm trying to say. Maybe I'm trying to say that I feel like I should be learning a hobby or catching up on shows or cleaning my damn house so we can sell it in time to move closer to my parents so Ro can go to the same school system all the way through. The reality is that I can't even find time to shower, and any free time I have is spent reading (I refuse to watch TV news) the news or listening to news radio or scrolling through facebook, where the comments and reposts give me the dopamine hits I used to get from this blog.

It will be interesting to read this later, when this buzz has worn off.

*I also have been coloring on this very beautiful calendar from 2017 that I kept. Don't say hoard--er, WAREHOUSING--never came in handy. 

Monday, April 06, 2020


18: Days since we last interacted with a person outside the nuclear family within six feet. 
22: Days since I’ve seen my mom in person (which seems selfish to say when H doesn’t get to see his for years at a time, but I’m spoiled. And my mom lives 10 minutes away). 
7: Days since H started feeling super achey and weak, keeping to our bedroom and bathroom and only coming out for food. I have never seen him so lethargic and I am very scared. Every time he coughs, I go in there and ask if he’s short of breath. He has promised to let me know and go to the Emergency Room if the situation worsens, but it seems to be getting better. 
20: Days since we got groceries (full disclosure, my brother ordered a pizza for us one night and we ordered tacos once). 
0: Days I have worn non-athleisure gear
2: Days the weather has been in the upper 60s and 70s

4: Days it has rained

2: Days it has snowed
97: Rejected/half-eaten meals that I have had to eat as my meal
8: Nights the children have had to be told “NOW IT’S ALREADY TOMORROW, PLEASE! GO! TO! BED!”
4: Times kids have slept in long enough for us to complete at least one work meeting without interruption
26: Times I have gone into the room(s) of shame with the intent of trying to sort it out and ended up leaving and closing the door after about 15 minutes. 
12: New friends Ro has on FB messenger kids
687: Times Kash has requested us to play the “PJ Masks” Themesong
2: The hour limit on their iPads

10: The number of hours they likely have some kind of screen on near them
11,632: Fights over a single toy
3: Hours a night I’m averaging of sleep, whether I’ve had caffeine or wine
238: Pages I have left in “Americanah” by Chimamanda Ngozi Adichie, which I have been reading since February. You’d think I’d have more time to read but I seem to spend all that time (and the hours I should be sleeping, reading FaceBook). 
1: Times I’ve opened a bottle of wine for a drink by myself (as opposed to being on a Zoom call with friends)
2: On a scale of 10 about how well I think we are handling everything right now. 

Crowns we made with the help of children’s author Mo Willems and his YouTube Lunch Doodles series. 

Saturday, March 28, 2020

the 'rona

We are now a full week into Illinois's Shelter in Place to stop the spread of the COVID19 virus. To say I'm anxious is an understatement. We didn't hoard (ok, maybe I do have a couple more boxes of Triscuit and Wheat Thins than I normally keep) so I'm scared we won't be able to find toilet paper when the time comes that the 15 rolls we have left are gone.

There are people who are not taking the social distancing recommendation: staying six feet away from others and only leaving the house for necessary tasks like getting food or going to work if you're an "essential" employee. I wish I could say with certainty that every member of my family is following this advice, but I suspect my father--whose mantra is "nothing happens"--can't help himself. This is terrifying because, while he is 70+ and definitely at risk, my mother is immunocompromised from all the chemo drugs, and susceptible of getting very very sick if she gets it. That said, she's "essential." She works in the hospital and I'm trying very hard to convince her to retire. With very little success.

The local hospital is putting employees that don't have much to do right now (like outpatient mammography technologists) into a "labor pool," and sending them to do needed tasks around the place, like sanitizing and cleaning and picking up trash. At our community hospital there are nine cases of COVID19. I can't even keep up with these statistics. I think it's something like 85,000 cases in the United States at this point. The numbers don't really reflect reality because we aren't testing enough people.

There's so much to say about the political state of the world, but I'm trying to focus on how people are pulling together--my alma mater has come up with a ventilator they are putting into production very soon. The vacuum people, Dyson, also invented a ventilator and are getting 55K in production. Abbott Labs in the Chicago area invented a 15- or 13-min (depending on the result) test that is approved by the FDA and is getting out for use next week. Plus there are various therapies and vaccines that are in clinical trials.

H and I are working from home, as we are essential-adjacent, but we know people who have lost their jobs and are struggling. My brother, for whom I worry the most, is reluctantly staying home and working from home (also essential-adjacent) and probably withering from loneliness in his big old house alone, though he'd never say so. H's folks are also sheltering in place, the professors teaching online and the others working from home as much as they can.

We have the kids at home with us; our daycare shut down along with the shelter-in-place order. "Working" while the kids are home has been challenging at best, and I pray that our inability to be as productive isn't going to affect our employment. I realize how lucky we are to even make that statement, in light of how many people applied for unemployment this week--3.3 million--blew the previous record out of the water. I heard on the radio that unemployment is projected to hit 30 percent. It was 25% during the Great Depression.

These are strange and terrifying times. I can't recall how many times I've heard the word "new normal." But nothing about this is normal. We have tickets for the August 13 "Hella Mega Tour" at Wrigley Field concert featuring Green Day, Fall Out Boy and Weezer. We had been searching for a fourth person to join H, my brother and I. However, I suspect that isn't going to happen now.

Ro's kindergarten roundup was canceled in early March. She's supposed to start school in the fall, and we were planning to hurry up and sell our house, then buy another one in my parents' school district--ideally so she'd go to school next door to their house. I don't know what is going to happen now. Maybe she will go to the school near us and the trajectory of our lives will be much different than what we had planned. I guess that's the way things always go, though.

The thing that terrifies me the most is H or I getting this and leaving our children without a parent; flawed as we are, no one will love them as much as we do. I have recurring nightmares about this. Only slightly less frightening is that a loved one will get this and we will have to contemplate their suffering (or worse) without being able to be there with them. I've already started hearing about people losing grandparents without having been able to say goodbye. No one is having funerals anymore, either.

Dr. Anthony Fauci, the nation's go-to guy about these things said that a highly contagious symptom-less upper respiratory virus like this is a worst-case scenario. Even worse than Ebola, because it's very obvious who has Ebola and you can only catch that if you're in very close contact with that person. They are finding COVID19 on surfaces of those cruise ships 17 days after everyone had been off of them. Not good.

The grocery and convenience stores are still open. The truck drivers are still making deliveries. Some people are acting like this is a staycation. People are cheering for healthcareworkers, who are starting to become infected and dying here, as they have been in China and Italy for some time. Things are going to get much worse before they get better. And yet, I'm hearing about people secretly meeting up to work out together or have game night with booze. Do they think they're invincible? They know enough not to advertise what they're doing, so clearly this is just selfishness, right? But because of their weakness we will all be trapped in our homes and there will be unnecessary deaths. And that makes me so mad. SO mad.

My biggest struggle is that those who are complaining about being stuck at home, or talking about online shopping or day drinking or hobbies aggravate me. It's not their fault, but I can't look at one more person mourning the high school seniors' lack of Prom or Graduation without wondering how bad the wailing would be if those promising youngsters were instead being drafted into a war. And those who are so incredibly inconvenienced by staying home getting together to work out and potentially spread this around further, they make me irate. Probably way more angry than I have any right to be. Unfortunately for them, I will be remembering those who joke around about being "an irresponsible human" and going out for drinks or dinner when we should have been staying home. I see them in a different light and it makes me sad, then guilty. Because who am I to be judging people? This is the stuff that keeps me up at night: Fear, judgment and guilt.

Monday, February 10, 2020

whoooa, we're halfway there

Gone are the days when I have time to edit my thoughts into coherent bits--and since I have only recently discovered that most everyone else in this world has an inner monologue that basically tells them what to say and do, word for word before it comes out of their mouths *, and they don't spend 95% of their typing time hitting backspace to translate the four different emoji conversations happening over the background song (at the moment it's "I Like Me Better When I'm With You" by Lauv)--anyone who happens to still be reading this is stuck trying to figure out what I'm trying to say, as I edit the feelings and images in my mind into English.

It's coming up on Valentine's Day. Jon and I have declared that a "dead" holiday for us (perhaps after 13 years, a blog reveal about H and two children later, we might now be able to talk about how we almost broke up on that first one...some other time). My actual best February 14 ** was going to IKEA with one of my bffs and Prom Date, highcon, who gathered us together this past weekend to say adios to Chicago (again) as he officially moves back to New York (again) to be with his love, K

I rode the train in with JZ, a friend of mine from elementary school, who also ended up being great friends with highcon in junior high/middle school. The districting around here is wacky so JZ and I were split in jr. high and everyone was reunited together in high school, where I met highcon. I'll skip to the TL;DR: We all go waaay back.

So JZ and I are at this fancy restaurant an entire hour early. I send this text to highcon

"T-53 minutes. Highcon, do you know where your wallet is?

And your phone.

And your keys.

And your man?

We are here and already drinking."

His response, 46 minutes (or T-14 minutes until the private party was set to begin):


I lost my phone!!!!!

It's in an Uber and he's meeting us at [fancy restaurant].

My work one.

Kill me!

So, you called it"

Highcon has a history of these shenanigans. It is mind-blowing that someone who cannot keep track of mundane things such as cellphones, keys and wallets has somehow risen through the ranks to become a bigshot at an international company, literally making billion-dollar decisions on the regular. I'm not usually one to drop annoying hints like this, but he and his equally successful sweetheart have a house on Martha's Vineyard and travel the world for fun. But at the end of the day, he's still the same silly guy who'd procrastinate with me on English papers and talk smack about classmates until the wee hours of the morning on the phone in high school. 

I had already been feeling extremely nostalgic recently. I don't know if it's because I'm starting to really feel the wear and tear of 41 years on my body, or that caring for small children while trying to maintain a house, a marriage and a very demanding job that requires me to not quite ever be "logged out" is making me wonder what would have happened if I had taken any of the other options when I got to forks in the road. I regret nothing, but when you watch cheesy teen movies like "To All the Boys I've Loved Before" and read books about young people coming into their own and discovering love and life, and you celebrate one of your besties taking a great leap into the semi-unknown (his mom asked K if he was "ready to have highcon full time"), realizing that you're halfway done with this life is kind of like a sharp kick to the stomach. With a lot of Monday-morning quarterbacking. 

During the warm and jovial dinner, several of us got a text that a classmate (and good friends of one of the other people) had suddenly died of cancer, leaving behind a wife and a 15-month old. This, on top of the unexpected death of Kobe Bryant, who was revered in our house by the devoted Laker fans, the one-year anniversary of Ri's brother-in-law-to-be dying of a heart attack a month before his wedding to her sister, and the pre-sad anguish anchor I drag around every moment of every day about the possibility of losing my brother was too much to bear. I broke down. Maybe it was the alcohol.

JZ had a clearer head and got me up and out of there so we could catch the train home. I had to be at work at 6am Sunday, for a work go live--which was not a fun experience, but I'll have to write another post about how the job is going. I was so thankful to have that evening. Sixteen people came together to talk about why we love highcon, sharing stories digging up exactly the kind of dirt you have on someone with whom you rode the bus or helped figure out how to put contact lenses in. 

The morning after the party, when I was broke-brain as hell, I got about 3/4 of the way to work and realized I had left my computer at home and got there at 6:20a instead of 20 min early. Then I couldn't locate my cellphone for about 5 hours. I literally walked from the car, into the office, up the steps and to the Command Center to check in. I couldn't have left it at home because the directions were telling me just how late I was going to be and I was listening to Sarah Silverman tell Conan O'Brien about how he thwarted her plans to make out with him many years ago by telling her he was recently engaged. After THREE car searches, I located my phone. I texted highcon and JZ

"Dude, thank you (and K) for the lovely party I had so much fun, and sorry if I was obnoxious--I haven't been drinking in a LONG time!

In total karmic justice, this morning at 5am I forgot to put my laptop in the car and had to turn around halfway, and then couldn't find my damn phone for like five hours! It had slipped between the console and the passenger seat. I think this is payback for giving you crap yesterday."

His response:


See this is why we are friends

We are all functional hot messes"

I guess what I'm trying to say is that I don't know where all the time went. But talking about all that old stuff, which was SO IMPORTANT back then, and realizing that most of us can only even recall it in pieces so we have to be in the same space to argue and put it all together, makes me realize that this life is zooming. Just flying by. And I'm so thankful to have written some of it down. 

*subsequent posts on this dude's blog say that he has ADD, so there goes that theory (I am not officially diagnosed, but an ADD therapist said almost all the markers light up for me having ADHD or something of the sort).

** I pulled that post up on my phone to show K what a sweetheart highcon was for going to all the trouble of printing out a kids' coloring-book valentine to give me on the way to IKEA.