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.