Saturday, May 19, 2012


I am not ungrateful. Hudson, there are many wonderful things in my life for which I have much gratitude. Your Dad is all that and a bag of chips. I have not one, but two families who are fabulous blends of loving, crazy, fun, complicated, and supportive. Even if it sometimes drives me bananas and some of my coworkers are - shall we say - challenging, I generally love my job and the wide majority of the people I work with (kids to adults and everyone in between). We live in a wonderful place. You have many incredible doctors and nurses who have cared for you throughout your life, and we are lucky that they will continue to do so. Medical technology has come far enough in human history that you are alive. Friends and family who range from close to previously unknown have been jumping through hoops to help us through this all. Do I direct my gratitude at a benevolent creator? No. I thank people, and I am grateful for actions and choices that help and support us. I'm afraid I sometimes seem like I don't appreciate the incredible things around me just because I don't engage with some popular means of joyful expression, but boy am I getting frustrated with abstract and displaced gratitude.

How could I not be grateful for the new heart you just received? To use some support groupy jargon, you've been given a second chance, new lease on life, fresh start, etc... ad nauseum. However, to what or whom should I be grateful? The family of your heart's previous owner, of course, for their decision to let their loss serve such a vital purpose for another district union (or maybe the administrators?) for ensuring that we have such kick-ass insurance that we can afford your care...your Dad for wanting to live anywhere near the hospital where the right people with the right expertise could list you for a transplant at just the right time for you to get it...those doctors for trusting you, themselves, and one another to make this successful...yup, that's pretty much the bulk of it. I am deeply grateful to those people. I will even go farther and be intensely grateful to whoever established this hospital to function the way it does (it's profoundly family-oriented, and the overall organization of the place just makes sense). I'm even happy to thank the genius who decided to put a place that sells chocolate croissants in the lobby, because seriously. Chocolate croissants.

Friends and family alike have been thanking God a whole lot, and that continues to make me uncomfortable. I get what that means to many (if not most) people - I really do - but the further along we've gotten in your life, the weirder it makes me feel. Let's look at this situation objectively. From a purely biological standpoint, you have no business being here, Hudson. A hundred years ago (hell, ten or fifteen years ago), your chances would have been crap. No human being was meant to survive with only part of an only partly functioning heart. No child should need to grow up covered in scars, regularly being poked and prodded to make sure that his motor is still working. (To be selfish for a moment, no parent should need to live along with a child's life like this, either.) I'm less disturbed by ascribing this all to fate or destiny, but that still implies a divine plan that seems like it could only be rooted in sadism. Any deity that would put a child into the world that is as damaged as you - then require the sacrifice of another child to keep that first one going - is not something I'm willing to thank.

It's been basically impossible to internalize the fact that you are alive right now because part of your body was taken out, essentially thrown away, and replaced with part of some other kid. You've had open-heart surgery before, and I never really bought the fact that a tiny piece of Gore-Tex was put into you then, so how can I understand you having a whole new heart now? Somewhere, some other family is probably having the worst week of their lives. I only say probably because I just don't know what happened: there may be no family left, they may have encountered other substantial tragedies before, or the loss of the child whose life turned into yours might have been a bittersweet relief. We won't get to know for a year - if we ever get to know - the life story of your donor. Like I said, I'm certainly grateful to whoever made the decision to let that heart come to you, but what kind of sicko would I be to be thankful that another child had to die for you to live?

As angry as I have been lately (it's catching me a bit by surprise), I don't want this to be another angry atheist rant, especially because I had a really odd experience a few nights ago that gave me pause. I'm certainly not bouncing towards a different theological slant, but as much as I claim to understand and appreciate what role God, prayer, etc... plays for others, I don't think I'd really seen it in action before.

Since moving in to what I call "the dorm you DID want to live in" (the patient family house just a few blocks from the hospital), your Dad and I have gotten to be buddies with a couple whose son was born with similarly complex heart defects to yours, but he also has Down's Syndrome and has needed to follow a pretty intensive course of treatments and surgeries since he was born. They've been here almost as long as we have - in fact, they started out right next to your first CICU room - but their little guy has never been out of a hospital in his eight months of life. Regardless of a dicey prognosis, both parents have essentially let their lives fall apart in order to pursue the best treatment for him. They've lost their home, lost their jobs, displaced their two year old (healthy) son, and essentially lived in and around hospitals far from home for almost the last year. The dad has gotten especially friendly with us, to a point where we check in with with him about his family whenever we see him, and vice versa. The day after you got your new heart, I ran into him in the kitchen. He had heard the news from your Dad, and was about as excited as anyone else we've told. I said something to the effect of "I guess the stars just aligned..." and his response was about as emphatic as could be. With an enthusiastic fist pump, he said "Luck had nothing to do with it: that's the power of PRAYER!"


I mean, I'm as thrilled as humanly possible that you got what you needed, but I get what that means. I know what had to happen. (Clearly,) I can ramble on about balance in the universe, the feasibility of divine intervention, and the potential ethics of any deity overseeing proceedings such as these. What I saw in this utterly tragedy-ridden individual was that his life - his tragedy - had to be the fault or doing of something external because there had to be blame or rationale. To most people, these things don't just happen. How could they? Statistically, there is no reason for anything in your life to have gone the way it has (your initial defects, your initial survival, your thriving, getting a heart when you did, and far more), so it's arguably almost as reasonable to be grateful to a benevolent and loving God for everything working out as it is to thank excellent doctors and a healthy dose of freak luck. I'm going to stick with the latter for now, but I think it's fair to say that I've come to understand just how reasonable my position is relative to anyone else's. 

Wednesday, May 9, 2012

We can rebuild you...

This is hopefully the last "holy shit, my baby is being cut open right now" post I have to write for a very good, long while, but yeah, this is one of those. Your new heart is en route, you are already knocked out and filled with tubes, wires, and other scary shit I don't really want to think about, and a nurse just stopped by to tell us that they've made the first incision. (Something about that phrase feels so TV medical drama, so scripted.) Honestly, the gravity of the situation has yet to fully descend upon me. By the end of the day, your heart - that damaged and only just barely functional pile of defective cells that has kept you going for three months - will be replaced with a healthy new one. A part of my brain has just skipped ahead to the reality in which you are a healthy, happy, growing little boy who just happens to be on shit-tons of medications and who regularly need to check in with cardiologists. That has to be the reality we inhabit.

Right now, my brain is just skipping around like the music from a CD walkman that keeps getting jostled. I can stay on track for a couple of seconds, then something jiggles loose and I drift into silence for a little while. Even though this morning started completely normal, and we are (thankfully, as everyone keeps reminding us) well-rested and appropriately fed, and I got to spend pretty much the whole morning snuggling you, everything feels like it's skipping around. I'm reading NPR, half-assedly chatting with your Aunt Stephanie, writing, vehemently trying to convince myself to eat and drink (your Dad got me a mango smoothie and nutella wrap from the awesome burrito place across from the hospital), and watching out the window as people smoke directly underneath a no smoking sign outside the hospital. Nurses in the "liaison program" have been stopping by to keep us posted on your progress, but waiting rooms do not actually operate within any normal parameters of time. 

Last night, I felt inexplicably like I had to snuggle you longer and more seriously than normal...not that I really ever let you be put down while we're around. I had a tough time falling asleep, and had funky (but utterly irrelevant) dreams. This morning, your Dad and I woke up like normal. I've only been showering every other day most of the time we've been here (mostly to give my hair a break from constant blow-drying, but also, who the hell am I trying to impress?), but I chose to shower today even though I basically didn't need to. I opted to wear really comfy clothes, even though they're a little schlubby. We got to the hospital at a normal time - around 8:15 - and wandered in to find you whining a little because you were awake and bored. Your nurse came in, introduced herself, and then proceeded to ramble at us about her family, love of lobster, and a number of other seemingly irrelevant personal details. (We'd never worked with her before, but she basically did nothing all morning but kick asses and take names to make sure everything you needed got done, then left us alone to cuddle; she wins.) Just when your Dad and I started to think she was trying just a little too hard to be friendly, one of your transplant doctors came in to the room.

Now, I don't like to label people based on appearance or mannerisms under any circumstances, but when every day brings new doctors, nurses, specialists, and other assorted and sundry support staff who introduce themselves with the disclaimer "I know you've met so many people, but I'm..." it's crucial to latch on to any distinguishing markers we can. For example, we've had Hipster Cardiologist, Twelve Year Old Doctor, No Confidence Nurse, and Scarily Overenthusiastic OT Lady, but today, it was Calvin Klein Model Transplant Doctor who walked in, all smiles, and said "we're getting a heart today." I don't think either your Dad or I were particularly shocked (for reasons I will detail below), but it definitely changed the course of our day. Instead of just sitting around and quietly reading, snuggling, napping (you, not us), eating (you and us), and puttering around on the internet, we gave you glucose water instead of formula (then made a ton of jokes about pumping you full of Kool-Aid and handing you to the surgeons all hyper and sugar crazed), I went with you for an x-ray, you got an EKG, we gave you a bath (which you hated), a nurse gave you a pre-surgical scrub/bath (which you hated even more), and then you napped on me until we were given the all-clear to go to the OR. A little before 1:00, I handed you to the most enthusiastic, friendly, and potentially baby-crazy anesthesiologist on the face of the planet. Your Dad and I locked down seats in the waiting room, chatted briefly with your surgeon and our social worker, and then started waiting. I hate this kind of waiting.

So why the hell wasn't this surprising or shocking? We knew this was coming eventually, but  it had gotten terribly familiar, easy, and comfortable to just go through our normal routine here. We knew that we'd have a day - hopefully not a middle of the night - when a nurse would periodically check in with us to share such cripplingly odd details as "they just put him on the heart/lung machine and they're working on dissecting around the old heart." That really happened. We also knew that we stood a good chance of having a few misfires: a few OR preps that ended with a heart going somewhere else because it just wasn't right for you. There wasn't ever going to be a true "holy shit!" moment, rather we fully expected to just roll gently into fear and excitement. Still, we waited one month - to the day - from you being listed for transplant to your crappy heart being put into a medical research library. Nothing suggested this would happen so soon. I don't want to over-inflate my prognosticatory tendencies, but I totally saw this coming. How, you might wonder?

Indicator #1: Eerily perfect timing. It's been exactly four weeks, to the day, since the decision was made to list you for a heart transplant. Also, we had started talking with your cardiologists back in Portland about possibly transferring back there to wait for a heart to become available. After your Dad and I totally spaced out a meeting to discuss details yesterday afternoon, I was really anxious about looking like an asshat in front of your cardiology team, but everyone was so excited about your new heart this morning that any transgressions on our part were entirely forgotten. Plus, we got to the hospital just when everyone started looking for us to share the news. No two AM frantic call, no panicked hunting us down while we were out grabbing dinner.

Indicator #2: Your Aunt Erin's dedication to and success in her chosen career. As you will shortly come to know, one of the people who loves you most fiercely in all the world is your Aunt Erin. She has been on call, ready to be here at the drop of a hat from before you were even born, to a point where she has recently put off making substantial plans that would make her in any way unavailable. There was, however, a conference that put her out of town and essentially unaccessible today. A few weeks ago, she mused to me that you were almost definitely going to get a heart when she couldn't possibly be available, and of course, that's today. 

Indicator #3: Mommy gut. I knew something was going on last night. I hoped it wasn't anything bad looming on the horizon, but as soon as we got in this morning to find you plastered with your trademark cranky, judgmental face with irritated whining coming from behind a bink, I knew you were fine and it had to be something else. Yup.

Indicator #4: A balloon. Until recently, I found the pervasive proliferation of balloons in pediatric facilities kind of weird. I wanted no part in it. Much of this can be owed to my neuroses about balloons, namely that they seem to possess an almost lifelike quality that makes me extremely sad when they deflate, or "die." Within a day or two of you being listed for a transplant, I caved to the collective peer pressure of being in a children's hospital and snagged you a balloon from the "Free! Take one!" collection at the front desk of the ICU. Apparently balloon technology has progressed substantially in the last decade because this sucker just wouldn't stop floating. Somewhere in the last few weeks, it got into my head that this balloon wasn't going to deflate until after you had a new heart. I knew it was going to outlast your old heart. It has lost some girth, and it's gotten a little floppy, but this morning was the first time I saw it sag on it's ribbon. 

Your Dad and I were told within the last hour that your new heart is in, it's working, and you just need to get stitched up and situated in the ICU before we can see you. Of course I'm relieved, but once again reality is just not catching up with me. I don't even know if seeing you in the messy pile you'll be in will make me really accept this situation as something that has actually happened. Your surgeon told us that as soon as you were put on bypass (having all the work of your heart and lungs done for you), your original heart started to die. Instantly. Of course this was the right course of action. Of course it was going to happen today. Of course your Dad and I are overwhelmed with relief that one of the most important yet also tragically flawed parts of your body has been mulliganed. Of course I was terrified and crushed by your last operation; it ultimately wasn't enough. I've been saying "of course" a lot today, but the sheer inevitability of this happening seems so obvious.

Monday, May 7, 2012

Goodbye, pants.

At times in everyone's lives, certain physical objects come to carry certain significance. In small children, these are often a stuffed animal, blanket, or some other soft comfort object. As we grow, these objects sometimes switch from a single item to a category of things (i.e. cell phones, backpacks, books), but in all but those few truly successful Buddhists, there is always some precious object that provides a certain element of security and safety. As adults, many of my friends still cherish some beloved childhood treasure, but a lot of us have switched our attachment to a form that is more easily transported, socially acceptable, and entirely subject to the same loving destruction as our threadbare stuffed animal or demolished pile of shredded blanket. (Mine, by the way is the latter: I'll show you sometime, assuming it hasn't disintegrated into powder by the time you're old enough to appreciate it.) Clothing is the adult teddy bear.

Often, a beloved item of clothing just has something special about it, either by virtue of being unique or somehow expressive of the wearer's personality. Your Aunt Erin, for example, has an electric blue hoodie that is part of my residual mental image of her, so much so that I basically can't imagine her without it. With many people, it's not so much the specific item itself as a representative of a type, such as your Dad's Birkenstocks (one pair of which he had for nearly two decades, the newest he's only just started to break in). Aside from being hella comfy, they reflect back to a substantially formative part of his past and just make him really happy. Like the favorite souvenir toy from a family trip, comfort clothing can connect to a specific time, place, or event, like your Grampa's hat that bears the name of the boat on which he and your Grandma spent a particularly fun vacation.

Sometimes, there is a certain function that much-loved clothing serves that nothing else can. In my case, there was this one pair of jeans. Since I moved to Maine almost six years ago, these pants have been more reliable than almost anything else in my life. Like the stuffed animal that finally bursts a seam after years of snuggling, my beloved pants met a sadly inevitable end. Over years, the cuffs that dragged on the ground snagged and wore away, and the seams along the sides of the legs thinned. A snag on one of the beltloops blossomed into a full-on tear, but I quietly ignored it as I so rarely wear a belt. Raggedy to the last, I happily continued to wear my jeans because damn it, they still fit well. Last week, I noticed the true beginning of the end: a worn through hole on the upper inner thigh too large to ignore.

I've struggled my whole even vaguely adult life - beginning in my earliest of teen years - to find any pants that fit. I feel a little bad saying this, but as soon as we found out that having a heart condition would make it a little harder for you to put on weight, my first thought was "oh, thank goodness he won't have my butt." Seriously, dude, buying pants for this thing is nigh impossible sometimes. The first time I wore denim as a young adult (I think I was around nine or ten), I didn't realize that jeans take a few days to really break in; I suffered through several days of school with an ill-fitting waistband cutting brutally into me while I self-consciously tugged to keep it from slipping down my butt. Eventually, they loosened up enough that I didn't constantly think I was being squeezed in half, but I was wary. Oh, was I ever wary. I never shopped for jeans again without sitting, squatting, lunging, and stretching myself in every possible direction in order to determine that yes, these pants would sufficiently cover me and not be excruciating in any way.

My jeans - those wonderful pants that practically jumped off a rack at me in Macy's one afternoon when I was still trying to convince your Dad that we were a couple, not just roommates - had hit the end of the line. I persisted in wearing them, of course, because what other pants did I have? When your Dad and I threw the bare minimum effluvium of our lives into a few bags and hauled ass to Boston with you, I only brought the pants on my butt and some pajamas. Besides, my jeans were my security blanket, and even if they were getting a little ratty, I needed them.

When they dealt themselves that fatal blow by tearing, I didn't want to accept it, but you helped me out. You managed to goo your stinky formula all over my lap one day, and I was left with no recourse but to buy new pants. Of course these new ones are just pants - not magical jeans with the power to fit through every weight, shape, and season, and the indelible ability to make me feel comfortable regardless of circumstance - but it was time to move on. I've still worn the old jeans a number of times, especially when I'm feeling down for whatever reason, but every time I wear them, you make your opinion of them known. I've been spat up on, peed on, and I'm pretty sure you've deliberately burped on them by aiming your face down when I pat your back. I think you're trying to tell me you're my new security blanket, as it were, and who am I to argue? Goodbye, pants. I won't say you've been replaced, but there is definitely something better and more permanent for me to snuggle now.