March turned to April without me really noticing. I barely noticed February go by. Honestly it feels like I’m still stuck in January, but meanwhile May is creeping close and soon too will pass because we’re not going home in May, and stranger things have happened but we’re probably not going home in June either.
He’s desatting again. Apnic again. Needed another blood transfusion last night, again. It’s probably not another infection but it might be another infection. Doctors again don’t seem to have any answers for us. The cycle is so repetitive that I have trouble recounting my version of it to doctors (we have a new doctor, again), remembering the order of events, the sequence. I tend to chart time by courses of steroids. Was it after the second or the third course of decadron that this happened in this way? When did the apnea start? When did his tachycardia show up to stay? In my notes for other entries, I noticed four weeks ago he had an echocardiogram to check for pulmonary hypertension, his third such check for just that thing. Guess what he got another of this morning.
One significant change between the present and the past is we are no longer receiving four to five care packages per week. Which on one hand is a blessing because we feel indebted enough to karma and the kindness of strangers, and we have clothes and books and snacks aplenty and I’m still surviving on the Starbucks gift cards, among others.
And we do still feel the support from the world at large, particularly east-central Pennsylvania, where Alex seems to be so popular he’d probably be polling pretty well for 2020, if any pollsters knew enough to ask about him. And we do still have abundant support from family and close friends, sending us encouraging messages and random photos and Instagram messages full of love and humor. But the mail has mostly ceased, and the fundraiser too, which please understand is not a bad thing, and yes we will make good use of every donated dollar, but for at least a solid two months of Alex’s life we’d be able to look at that and marvel how much people cared, how much they were paying attention, enough to pitch in actual real money dollars and not just the token sentimentality so often used as currency, the proverbial thoughts and prayers. Which makes this current iteration of Groundhog Day feel just a little more hopeless than it probably deserves.
We’re closer to the end. We know it intellectually, but it’s hard to reckon on an emotional level. And not just because I’m on a new depression med (and pooping again! whee!!). It’s because when you fix something you want it to stay fixed. I liken it to having a vehicle with one wheel that keeps losing tire pressure. It’s not bad enough to lop off a limb and start over with a whole new Goodyear, but also you can’t even find where it’s leaking from and so all you can do is fill it up and wait, fill it up and wait, and soon even the act of filling it up loses any real satisfaction. But the guilt remains, because if you don’t fill it up, you know the tread will wear wrong all the faster, the alignment will get all the more wonky, but dammit, you just don’t want to do it right now, is that okay? Can that please just be okay with you?
I’m sorry but sometimes I get so frustrated with you I want to punt you across the room. Two IVs? Just to get a blood transfusion? Who needs two IVs, honestly! And who stops breathing just because they’re a little stressed out! Or for no reason at all! Because you’re too comfortable, as though that’s a real problem. You don’t even know what real problems are. You don’t even know which problems you have are the real ones. Do you understand how much authority I have, here? Don’t you know how far I can punt things I’m sorry.
I take it back I’m sorry. Please understand it’s out of love. Sometimes when I’m holding you I’ll find the exact right spot for you to be comfortable, and forty-five minutes later my triceps muscle will feel like it’s on poison fire and I’ll realize I’ve been suspending you in the air, not resting my elbows on anything.
What I want to say is I am thankful for every thought and prayer but I can’t apply them. If they’re serving their proper function, they aren’t really for me, for us. It’s like having pockets full of a foreign currency. I can’t use it. If my baby improves, sure, no harm no foul, but when my baby regresses, what then. Did someone pray for that? Did not enough people pray, or did those who prayed not pray hard enough? Who do I have to track down and demolish for not praying hard enough, was it Jerry? Fuck you, Jerry! Go sit on a snake, you greedy non-adequately praying motherfucker.
What I do not want to say or even imply is that money is better than prayers, because while arguably more useful, money is finite. Unless you’ve got infinite money, then yes please, but an ordinary monetary donation, no matter how large, will always be locked to a moment in time. Even smells last longer. If all you were to do is come visit me in my charity hotel room, rip off a fart, and walk out again never to return, then that would have a more lasting effect than a donation, in a way. At least a prayer can be repeated.
I’m sorry for the pokes, for the heel sticks and the IVs. I’m sorry every time I watch a shot of water dash through your cannula and disappear up your nose. I’m sorry when I change your diaper and the wipes are too cold. I’m sorry I can’t hold you *all* *of* *the* *time*. I’m sorry I stare at you, sometimes, it’s rude. I’m sorry when I’m not staring at you, when I’m next to the bed but I’m looking at my phone instead. Sometimes I just can’t deal. Sometimes I have to play a stupid matching game and dissociate instead of focusing on the wind-feather flight of your vitals, or the paleness of your face. I love you, and I promise you I’m still there, even on standby, I will still be there when it counts.
Except what if I’m not oh god what if I’m not there or worse what if I am there but I can’t do anything can’t fix the problem can’t wake you up can’t bring you back from the gray
I’m sorry about all the drugs. The steroids, the stimulants, the lasix and laxatives, even the oxygen. I’m sorry we had to give you so much oxygen for so long, it’s one of my biggest fears is that your eyes will never forgive me. Sometimes I’ll joke and say that Retinopathy of Prematurity is why Stevie Wonder went blind, so worst-case scenario we’ll just need to buy you a piano, but there were so, so many days where oxygen was treated like the first and best solution, like Blue Oyster Cult’s cowbell, they could never get enough of it, and I try and I try to assure myself that these medical professionals knew what they were doing and the evidence of that is almost three pounds and breathing right in front of me, but when Mondays come around now and the eye doctor shows up and pins back your lids and you wail with more vigor than anything else can make you wail, I hold my breath. I analyze that doctor’s every movement, every seeming hesitation, second glance or delay.
It has started, the ROP, we found out a week and a half ago, but it’s only stage one. But his retinas aren’t growing. But it’s not worst-case scenario yet. But the disease has started. I go back and forth between counting my lucky stars it’s still so minor that it doesn’t even warrant treatment yet, and cursing the eternal souls of every ophthalmologist who hasn’t developed a prevention or cure. All the while, of course, self-flagellating for never once, back in those horrific 80% oxygen days, surreptitiously reaching over to the ventilator and turning down the flow myself. So I make myself watch him pin back your lids, I make myself watch you scream with holy fire, I make myself help hold you down, even, because your reaction is the only appropriate one, and my emotional palate has never proved itself capable of mixing that color on its own.
Please pray, is what I’m saying. Or don’t pray, the prayer part doesn’t matter. If ever these words were true: it’s the thought that counts. Please let these events show up in your mind, not idly but in motion. Next time you see your child asleep and breathing with ease, please love her harder and perhaps tuck her in tighter and enjoy the lack of an impulse to punt her into the night. Next time you see a man in a shirt of a ridiculous color (or several), take a half-second’s pause in appreciation of your own capacity to recognize that color (or several), or your capacity to recognize a shirt, or your capacity to recognize. Give yourself that permission to laugh. The thing that scares me, now, in this loop of the merry-go-round, with the dwindling fundraiser and the scarcity of physical, tangible care packages, is that possibly this blackjack game of suffering and bliss we’re going through is getting old. Cliché. Played out. Comedy equals tragedy plus time, they say, but in between comes apathy, and it’s apathy that’s most dangerous, an infectious disease for which the only cure is… …more cow bell.
No. Not that. I don’t actually know what the cure is for apathy, but as any Planned Parenthood will tell you, prevention is far more effective anyway, and much less controversial. So, just for reading this, I thank you. You’re doing the lord’s work. And if you remember us tomorrow, or the next day or the next, and you let our situation improve your life—I feel like that’s the ticket. I feel like, somehow, we’ll know, and we’ll feel better in kind. Which, I gather, is the whole point of prayer, anyway.
Unless, of course, you’re some kind of giant asshole, Jerry.
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