Thursday, May 9, 2013

One year

It has been one year since your transplant.

One year ago from this moment, I was sitting with your Dad in the OR waiting room. You were almost two hours into surgery, so you were almost definitely on the heart-lung machine, and the heart was on it's way. In fact, there is a good chance that right now is almost exactly a year from when I looked out the window and saw the truck that I am certain was carrying your new heart. Your Dad had run to Boloco, the amazing burrito place across the street from the hospital, to get a Nutella milkshake, a mango smoothie, and a Nutella "snack wrap" (which is simply a whole wheat tortilla filled with about a quarter cup of warm Nutella: an amazing, yet unholy thing), and he had swung by the cafeteria to get french fries and a handful of other unhealthy foods in hopes of tempting me to eat something - anything - while we waited. The chairs in the waiting room were actually incredibly comfortable, and we were able to more or less take over a little nook of four chairs and a few low tables; it was pretty brutally clear who was waiting for a child having a BIG operation, even though no one really talked to anyone else.

Waiting rooms are funny things. Most often, they are fluorescent-lit, sterile, cramped, and populated exclusively with uncomfortable furniture that often bears suspicious stains and tears, often marks clearly left by bored children. You usually have to sit practically in the lap of someone who you want nothing to do with, often even someone with whom you feel awkward even sharing air. As with many of the facilities at Children's Hospital, this one was not the norm; the lighting was mellow, the space was very open, and privacy was easily found by simply sitting a little ways away from anyone else and speaking softly. We eavesdropped on a few doctors' reports to other families - nothing dire or dramatic - but generally just wrote, stared off into space, and volleyed email and phone messages from people we were actually willing to talk to. I remember feeling like I should have been in more of a panic, or at least not in a state of eerie calm. I couldn't eat the Nutella wrap, or finish my fries, but that might have owed at least a little to the fact that it was a Nutella wrap and a tepid pile of fries.

That afternoon, I had a tough time settling in to really thinking about you. Part of me refused to process the reality that when I had snuggled, hugged, and handed you off to that insanely over-enthusiastic, baby-happy anesthesiologist, it could have been the last time I held you. A well-meaning nurse just doing her job made it abundantly clear that if things went bad, we would have a chance to say goodbye. (I still don't know what that means, and I really don't want to.) I focused on the moment as much as I could, and on mundane things I could control. Your Dad and I wrote on our blogs. We chatted with friends and family. We made it a project to make each other eat and drink. I had a lot of coffee. We mostly stayed a lot calmer than I think anyone expected, but then again, we were so far into being creepily okay with horrible shit that maybe it was on par.

I didn't think about a month after the operation. I definitely didn't think about a year, or two years, or five, or ten, or thirty later. I couldn't let myself get excited about the possibility of actually having you in my life permanently because every moment up to then had felt almost stolen. (I guess there's some irony to the fact that we only really got moments after then because of a lost life, but that's a whole other can of worms.) All I could let myself think about was the next time a doctor or nurse came to give us a progress report, and what drama was happening in the clusters of chairs near us until then. We were told when the heart arrived. We were told when it was in and working. We were told - by your surgeon - when everything was done and you were heading up to the ICU to get settled in. In the meantime, almost everyone else in the waiting room got their news, was escorted to a recovery room, or wandered off for food or sleep or some other basic need to be met.

When we got to see you in the ICU, hours from now and a year backwards in time, the first thing I noticed was your perfectly pink toes. They were cool, because you were still coming up to a normal temperature after they dropped it way down during surgery, but they were the healthiest color a foot could ever be. That was the moment I started to let myself believe that you were actually going to be here for longer than some hypothetical, medicalized amount of time. Your cardiologists would tease me, for sure, but of course, my eyes next shot to your monitors where the numbers - totally normal numbers for a child your age and size - looked foreign and bizarre in place of the totally abnormal numbers we'd come to accept. 100%, not 80%. 128, not 152. Pink, not a bluish purple that I never realized was wrong.

Even now, when I see the scars from any of the lines or tubes that went in or out of you, or when I feel the bumpy protrusion on your ribcage where things didn't quite heal evenly, I'm rattled back to the feeling that you are not guaranteed. That's a reality, and a horrifying one. A year ago, I couldn't let myself believe that I would be sitting here - a year from then - thinking about that almost unbelievable day. How many parents can say they were starting their third coffee of the day at the moment their child's heart was removed and likely jarred up to join a medical research library?

Right now, I'm sitting at my desk at school, abusing the good will of the students in the Poetry Club to get some personal writing done. I'm in a fairly comfy desk chair, there's a somewhat damp but pleasant current of air trickling through the window, and I have a few students in the room writing alongside me. You're home with your Dad, who I imagine is probably fairly burned out by this point in the day. His knees have been pretty terrible lately, but I know you made it grocery shopping this morning, so you've had a more or less normal day. I guess I did, too. Normal is finally normal again, as much as it ever can be.

Part of me feels like we should do SOMETHING about the fact that today is the day it is, but any kind of celebration feels unjust. What kind of sociopath celebrates the day that one child's life was saved because of the loss of another? I've had a handful of people already tell me that today is a "happy day," and it's made me flat-out nauseous. I'm not happy that this had to happen. I'm sure happy that I will get to scoop you up as soon as I get home, give you a big hug, and then probably have your saliva-wet hand shoved into my mouth (because you think that's hilarious). I'm happy that you will hurl books at me until I read them to you, not that I take much persuading. I'm happy that if we go out later, you will inevitably flirt with anyone who makes eye contact with you and probably garner tons of compliments and flirtations back. I'm happy that you will fall asleep snuggled up with me, chuffling softly and possibly drooling just a bit into my armpit. I'm not happy that I get to do this, and someone else doesn't who at one point just over a year ago, perhaps could have.

This is a strange day, Hudson. I just started training for a 5K this week, and I'm supposed to go running tonight, but I'm feeling like being even .6 miles away from you - like I was at work all day - is somehow insulting to the memory of that other little life that transmogrified into yours. We were supposed to go out tonight, too, but I'm pretty sure you and I are staying home and chucking books at one another (rather, I imagine you'll do most of the chucking and I'll catch them and read them to you). It's been a strange year, Hudson, and I'm glad I'm in a place where I can actually accept looking ahead to more of them.

Thursday, March 28, 2013

A poop story

This past Saturday, your wonderful Auntie Kat took me out to get our nails did (I am SO abusing the fact that she is from New Jersey to actually feel good about how my dry, crappy hands look), then joined us for a glorious adventure to a local taco joint (where you devoured something like three servings' worth of puffs, refused to keep one of your shoes on, but were otherwise a genuinely delightful dining companion) and to get ice cream at our favorite soft serve place. It was a really nice day, and you seemed to very much enjoy both the new scenery and the attention almost as much as your Dad and I enjoyed pretending that we were normal adults who ever left the house to do normal adult things. Kat, knowing she had some kind of a head cold thing, made a valiant effort to keep her boogery self to her self, to a point of refusing the massive snuggle-hugs you like to give her. Your virtually non-existant immune system, however, didn't stand a chance, and by midday on Sunday, you were oozing snot and generally wilting.

Now, I feel it is worth celebrating the fact that - aside from actually dying twice, nearly dying those other two times, and needing your heart replaced - you have not been sick once in your fourteen months of life. Not even the sniffles. There have been diaper rashes, yes, and you've been prophylactically treated for all sorts of nasty shit with all sorts of nasty drugs, but you have not actually gotten sick. I've spent months psyching myself out about what would actually happen when you did. Would even the tiniest hint of a head cold send you into the hospital with pneumonia-like symptoms? If your fever topped 100.9, would our next 24 to 48 hours be spent screaming in a local ER that just won't provide the quality of care we've grown accustomed to you getting in Boston? If you caught one of the 24-hour stomach bugs that so regularly sweep through my school, would we end up at the Cardiac ICU pumping saline and your anti-rejection drugs through an IV that you would use all your non-vomiting energy to attempt to pull out? Bottom line: would we end up taking a helicopter ride, whether we wanted it or not?

Nope. Your first non-ER, non-lethal illness has gone down like pretty much any other kid's. On Sunday, you were kind of stuffy and listless. This continued into the night, and you were basically just uncomfortable after hours of lying down with your poor little head filling with boogers. All that day, night, and into Monday, your face was a constant stream of clear, thick snot. Your Dad and I began almost competitively leaping to put a cupped hand under your chin every time you sneezed to catch the literal handful of boogers that goobed out of your nose...because we do that any case, it was clear by that evening that something had to be done.

I decided to be proactive and try out some of the at-home remedies that so many of our crunchy hippie friends (both on and off the internet) have recommended. I got you a tub of Baby Rub (which sounds far naughtier than I think the good folks at Vicks intended), made sure we were stocked up on juice and apple sauce, and ran the shower for ten minutes to get the bathroom nice and steamy before plopping you into the tub. You seemed squirmy in that classically Hudson pre-pooping way, but I figured it was just congestion making you antsy. I made a critical misjudgment.

Bath time has become a very happy, fun time. You love splashing - and I mean LOVE it - and we've collected a really excellent collection of toys that you chew on, toss out of reach then scramble to reclaim, and generally use to get tub water anywhere it shouldn't be. I will admit, too, that I get profound pleasure from giving you silly hair with bubbles. That night, I plopped you into the tub, gave you an array of favorite toys to play with, and sat back to watch you smiling, giggling, and generally being happier than you had been all day. Your Dad took ten minutes to sit down on the couch and check his email, and I sat on the bathroom floor by the tub to bask in your happy smile. With no warning whatsoever, your face squished up in that way that it only can when you are straining for a poop, and the tub slowly filled with horribly yellowy chunks. I yelled, "NOOOOO!" and your Dad started laughing from the other room.

His laughter, however, was short-lived. I summoned him for an assist, as you were bawling in that half-assed way that tells me you're really just annoyed, but you COULD be upset enough to cry if we don't fix whatever is wrong, and you had started angrily splashing about in your own feces. I plopped you, poo-covered, wet, naked, and now extremely happy and high-energy, on a clean towel in the middle of the floor. You immediately decided that what you wanted most in the world was either a hug from Dad, or to stick your face on the extremely hot space heater that I had been blasting to get the bathroom extra steamy. I frantically scooped watery poop down the drain, silently damning our landlords for not anticipating our needs and installing an extra-wide drainage pipe, while your Dad failed somewhat spectacularly to shift your attention to something less fatal or unpleasant. The tub finally emptied, I hurriedly scraped it as clean as I could, and I filled it with just enough clean water to scrub you down.

Hudson, I must inform you at this point that I did a fairly half-assed job cleaning you off. Your Dad and I were both grumbling and moaning about the fact that we - and most of our bathroom - were basically covered in some amount of your poop, so I figured it only barely mattered that you probably still had a vague patina of the same. It was late enough, and you were wound up enough, that the evening was basically lost at this point. I somewhat lazily tried to feed you some dinner, changed your diaper, crawled into bed for a snuggle, was forced by you to read the same three books aloud at least three times each, and then turned off the light. As you sweetly nuzzled your face into my chest, snortling with echoing congestion, one beautiful, fat arm clasped around my neck, I got the slightest whiff - under the intoxicating cloud of baby soap and your still-lovely smelling skin - of poop.

Friday, February 1, 2013

Batman: Year One

I don't know how soon you're going to wake up - naps are precious, and as happens too often, you've already stirred once - so I must be quick. I've been carrying around a lot of guilt, and I am feeling the need to absolve myself of some of it. I feel awful that I haven't been writing more; I have so much to say to you, and so many stories to tell, but so little time and energy. Actually, sometimes I do have the time - rarely, but sometimes - and I occasionally have enough energy to do something more than just lie around and watch terrible television, but I just can't motivate myself. Sleep deprivation is surely partly to blame...right?

This year...oh, man. Your Dad and I have been catching ourselves and going "holy crap..." every now and then. We've been parents for a whole year, and that is just surreal. You're huge, and I can say that with clinical certainty; you hit the 90th percentile for weight, which is just bananas for a kid who dropped down to the 5th percentile for a while there. You have these amazing little curly tendrils next to your ears, and a rapidly thickening head of gorgeous blonde hair. You've got five stabbity little teeth, and basically the most amazing smile I've ever seen on anyone, anywhere, ever. Just perfect. You give hugs on command, and wet, awkward, incredible open-mouth kisses. You snuggle our cat - perhaps, now your cat -Tanuki like nobody's business, and he genuinely seems happy to let you.

Still, I wait for naps with bated breath, and sometimes nearly find myself in tears with excitement when it seems like you might really be asleep for the night. I have to stop feeling guilty for needing breaks; you are exhausting, even (especially) when you are being adorable and affectionate. You've started doing this cool thing when you get hyper-excited and scramble frantically to hug someone - usually your Dad - while I am pretending to chase you. It's okay to be tired, and it's okay to just be lazy sometimes.

Parenthood, so far, has been a series of compromises. I didn't get to have the birth I wanted, or the first days and weeks with you that I wanted, or...well, it seems moot to complain any more. You know how things went down. I'm proud that I've never blamed you - not even a little, and I've never blamed your Dad or even myself for the general crappiness that happened during our first year together. Even still, I carry around a lot of guilt for the fact that your Dad and I didn't get to do so many of the fun and arguably normal lovely things that people typically do in their first year of marriage. Yes, we were home for our first anniversary, and we were able to go out and enjoy ourselves for a night, but we basically spent the whole year entirely focused on you. Again, no blame is being cast - none - but I do beat myself up more than I should for the fact that we didn't get to celebrate ourselves and each other the way we should. I need to get over it.

I'm feeling whiny, which I guess I ought not feel guilty about either. I don't want to be one of those crazy, jerky types who just lets herself revel in her guilt, but I do feel like I need to accept it as a way of moving on. I need to accept that I'm taking a break from writing for a little while, and that I am no less dedicated or loving a parent, wife, or human being for that matter by doing so. This afternoon, I realized while we were playing with play-dough that I had made a giant, yellow wang and you were poking the tip curiously. Let me sum up by saying that there is no cause for guilt for lack of being able to laugh at myself.