Batman, sometimes you just need to call people on it when they are being inappropriately crappy. This week, I had the (hopefully rare, ideally one-time) experience of calling a doctor a truly naughty name. Now, as you will soon know, and as my friends and family can surely attest, I am neither an angry nor an aggressive person. In fact, I tend to try to avoid confrontations at all costs, often to a point of accidentally letting myself become a victim because I just hate, hate, hate it when people are upset with me.
This neuroses is especially profound when it comes to anyone in the customer service industry; if it is someone's job to provide me some kind of care or support, I tend to go out of my way to be nice to him or her almost regardless of how poorly that individual is treating me, or how poorly they are doing their job. Receptionists, flight attendants, nurses, and doctors have always been a source of particular anxiety for me, as they legitimately hold a fragment of my fate in their hands. In my head, it is virtually required for me to do anything I can to make any person in one of these positions feel favorably towards me, if not to flat-out like me. This week proved for me that not everyone in these noble and not always appreciated fields is deserving of such esteem. (Don't worry about the flight attendants. They're still cool.)
This Tuesday, I left school about an hour early to make the drive from work back to Portland. Now, most people can leave work an hour early with minimal crisis; my leaving work is a far more complicated endeavor. I need to secure coverage for my end-of-day responsibilities, which effectively boil down to outrageously carefully choreographed cat-herding. Thankfully I was able to do so, and (still stressed about creating any change in routine for my kiddos) I scooted my way to the doctor's office. This was my first appointment with the "high risk" OB/GYN practice that I was told (by the head doctor there, hearafter referred to as Dr. D-Bag) I had to - HAD TO - work with for the remainder of my pregnancy.
Batman, I'm sure you recall earlier posts in which I all but damned the medical institution surrounding maternal care. From all I have read, heard, and seen, there is essentially no consideration for patient needs in this system; doctors do whatever fits their schedule and their (or their practice's) financial desires. Drugs and often superfluous medical interventions are all but forced, and patients are backed into every possible corner with nothing more than the excuse of "this is for the good of your baby" to explain their (often mis-)treatment. Naturally, when you showed up I went running to the most holistic practice I could find. As soon as the diagnosis about your heart came about, Dr. D-Bag told me that I could not - under any circumstances - continue to work with a practice that didn't have as explicit a relationship with "the hospital" as his does. To be fair, this hospital does have a regionally award-winning NICU, and we will be working with a truly exceptional cardiologist based there, but...did I really need to work with a terrifyingly restrictive, conservative, and medicine- (not patient-) oriented practice in order to take advantage of all of these resources? My gut said no.
I showed up at my appointment a responsible fifteen minutes early. Even not being a new patient, I like to show up early to appointments just to show that I am respectful of the practice's time. (Some little part of me wants a receptionist to someday either compliment my timeliness, or better yet, give me some sort of gold star. Maybe they make notes in their records of who shows up early and who doesn't...See? Neuroses!) At 2:30, when my appointment was scheduled, several patients had already been called in. I had not. At 2:45, people who had arrived well after me had been called in. I had not. Come 3:00, I meekly approached the receptionist and asked if she had any idea how much longer I would be waiting. I was told in no uncertain terms that I would be called when it was my turn, and that they were very short-staffed, so she could make no accurate predictions. I muttered something about having come early just to be sure I was ready when it was my time, and was thanked for my patience and asked to continue waiting. In the meantime, several people who had showed up after 2:30 had already been called in to their appointments, and a few of them were already checking out and leaving, having FINISHED their appointments. Still, I was not called in.
Come 3:30, an hour after my scheduled time, my desire to please the receptionist had disintegrated into more or less red-hot rage. I could have not only left school at a normal time, but I could have carpooled that day, saving myself dollars in gas money and however much carbon emission that a second car created. While silently stewing (and watching more and more patients be called in for their appointments, then checking out and leaving), I tried to center myself. Sure, I didn't want to be working with this practice, but it wasn't their fault that I needed their services. Even though I was livid at having so much of my time wasted, I had to walk into this with a positive attitude. Finally, over an hour past my scheduled appointment, the waiting room otherwise completely empty, I was called in by a nurse who immediately set my teeth on edge.
Now, here's some simple advice for all medical professionals: when you first meet a patient, ask "how are you today?" or something of the like. This shows that you are a human being, not some sort of soulless demon with a name tag. This nurse immediately started lecturing me about the need to work with her practice, citing all of my risk factors (which were described so obliquely as to leave me more confused than when I started) and, once she got my chart in front of her, berating me for not seeking their highly-medicalized care the second I got pregnant. I seem to have forgotten many of the details of our conversation in a rage-induced fugue, but here are a few highlights:
Nurse: "I see you were working with a midwife practice. Now, since they aren't really doctors, and really aren't qualified to give you prenatal care, I hope you can appreciate that we need to redo their records."
Me: ...annoyed silence...
Me: "I'm hoping to get a better explanation for why you want to induce me at 39 weeks instead of 40, given that my child's lungs may not be fully developed at that point...also, especially since the doctors I've spoken to want me to have as natural a birth as possible, it seems strange to me to introduce chemicals into my system that will almost definitely require more chemicals being introduced, and increases my chance of a c-section dramatically. Is there any more information you can give me about why this is an appropriate choice for my baby's health?"
Nurse: "I don't appreciate your getting irrational about this."
Nurse: "Our practice has twelve attending physicians or residents, and works with several other practices to cover nights at the hospitals, because our doctors are only available until 5:00PM. Your baby will be delivered by whoever is on call when you go into labor."
Me: "What are the chances of me meeting the doctor who does the delivery?"
Nurse: "In the thirty years I've been a nurse working with maternal-fetal medicine, I've never seen a case of a woman knowing the doctor who delivers her child in advance."
*Note: I actually don't know a single woman who DIDN'T know the doctor who delivered her child in advance, and I've known more than a few families who used this hospital.
Me: "I am really not comfortable having a man deliver my baby. Is there any way to ensure that I work with a female OB?"
Nurse: "That is a completely irrational request, and one that is frankly closed-minded. Again, you don't get any say in or control over who delivers your baby. This is just part of how we guarantee that you receive the best possible care."
*Note: WTF?
After about twenty minutes of this sort of round-about bullshit, and four separate occasions of being called irrational, this nurse clearly realized that I was too irrational for her to handle on her own. I was proud of myself: I stayed calm, collected, and focused on the needs and concerns that your father and I had deliberated and discussed in advance. This nurse left me waiting for almost another half an hour while she got the doctor to "discuss my concerns" with me. It was at this point that I realized that she had only weighed me, taken my blood pressure, and listened to your heartbeat; no actual examination had taken place, and there had been zero conversation about how I have been feeling, whether you were moving around much, if I had been, I dunno, pooping normally...nothing.
Dr. D-Bag comes in and immediately goes on the defensive. I am told - flat-out told - that I am making irrational requests, and that what I "have to understand" is that this is a situation in which I have no control, no choices, and should have no expectation of having any input about my treatment. In the roughly five minutes of face-time he gave me, I was told (again) that no woman he works with ever knows the doctor who delivers her baby, that being induced early is non-negotiable, and that wanting a female obstetrician is a hurtful and irrational desire. It was at this point that I called him a fuckhead.
Now, profanity has a magical influence on people. For some, it is a catalyst for further rage, beginning an escalating spiral of violent language, and often violent behavior. For others, it is a neutralizer, negating any potential further action and stunning the recipient into stunned silence or complacency. For people like me who just flat-out hate confrontation, it typically sways me - usually instantly - towards acquiescing to the profanity-wielder's will.
Apparently for Dr. D-Bag, profanity is some sort of secret key code that releases his patients' true desires from the clutches of his fuckheadedness. The second I showed him just how much he didn't want to deal with me any more, he immediately offered to transfer me to a holistic practice of six women, all of whom I would meet during my pre-natal care, and none of whom "pass off" patients to other practices if one of them isn't available. Turns out that getting exactly what I wanted - what I knew from the beginning to be right for all of our family - was completely an option from the beginning.
Not only was I kept waiting (which is mostly annoying, but ultimately disrespectful of my time, as well), but I was spoken to rudely and condescendingly, lied to, and I would have been denied my rights as a patient had I not acted against my gut instinct and called this guy what he really is. I can't believe I let this wacko perform my amniocentesis, but at that point, I didn't realize just how bad he was. Batman, I hope you can take this as a mark of several important things. First, your mother will kick anyone's ass who stands between her and the best care for her family. Second, there is no such thing as "no choices." There are always choices. Third, and perhaps most importantly, I have one hell of a gut instinct.
Turns out that this fuckhead...I mean douchebag...I mean *ahem* "medical professional" is a lapdog to our insane, scary, dumb-as-toast governor. He (Dr. D-Bag) and his uber-conservative doctor wife have both worked to limit the rights of GLBT patients, from campaigning to allow practices to deny medical care based on sexual orientation, to working to flat-out deny lesbian mothers pre-natal care. I might still technically have to deal with this dude sometimes until you pop out, but I've got another practice full of women who buy in to the same philosophy that I do to back me up, and there will be one hell of an angry letter going to his supervisor as soon as I don't need to deal with him again.
Batman, I've got your back, and anyone who tries to stand in my way is going to see a very ugly side of me.
Showing posts with label battles. Show all posts
Showing posts with label battles. Show all posts
Sunday, October 2, 2011
Saturday, September 17, 2011
The more you know...
It's pretty amazing how quickly one can come to terms with something hideous. I mean, what the hell recourse do we have? You have a congenital heart defect called tricuspid atresia, which means that one of the valves in your heart literally never formed, leaving almost half of your heart underformed and ultimately non-functional outside the Batcave. You're going to need surgery almost right away after you're born, which is pretty damn terrifying, but also really sucks because your Dad and I will hardly be able to see you for the first who-the-hell-knows-how-many days of your life.
All my dreams - nay, expectations - of a natural and nurtured, comfortable and casual birth have basically been tossed out the window. Here's where I really want to shit on all my previous judgments about the crappiness of medically-driven births and hope that all my theories about separation at birth being the root of all human evils were just hippie pipe dreams. All we can do is love the hell out of you from a distance when that's where we are, and give you every bit of our affection when we're allowed to be close. Breastfeeding might be a bitch, but it sounds like getting you to eat at all in the beginning might be tough, so I promise not to take it personally.
With an actual diagnosis to work with and at least a someone concrete prognosis (which is good!), we're kind of in limbo. I guess we're pretty crazy lucky to have found out about this before you were born so we know who to have on hand, what to expect, what kind of support system to have in place...all that important stuff. At the same time, now we've also got four and a half months of just bracing ourselves and waiting for impact. No, wait a second: we've got four and a half months to learn just how we need to kick ass and take names so you get exactly what you need, and we stay sane and happy in the process. I'm working on a five step plan to achieve maximum awesomeness, so here's my draft:
Step #1: Get Feet on Ground
I've had half a dozen people tell me how incredibly I'm handling this. Okay, sure, I might not have a reputation for being the most emotionally stoic human being on the planet, but this is the first time my child has been in the mix. I think your Dad is kind of in the same place: this is possibly the shittiest situation either of us has ever been in, but our reaction so far has been to just bunker down and deal with it. This might suck, but it will only NOT suck once the situation is resolved. Period. In any case, we get you out of it, so basically any crappiness that happens along the way is just some crap to wade through and leave behind.
Step #2: Muster the Troops
Okay, I've ranted against Facebook before, and will do so again, but it's been pretty cool seeing people jump to offer their support and good wishes after we finally posted some news about you. I think my favorite comment so far was from a grad school friend: "I have heard it said many times that babies choose their parents based on things they need and things they need to learn in this life. I am sure that Batman has chosen you and Ryan cause he knows that you guys will give him what he needs. You two are the only ones that will be absolutely perfect for him." Fuckin' a right! Even if a lot of the people who've jumped forward with kind words will only continue to offer those, that's a huge help. We know we have a shitton of awesome people who will help us in a LOT of ways, and you are one lucky little Batman to come into a world filled with so many people who will almost definitely punch a medical professional for you, should a medical professional need punching.
Step #3: Eschew martyrdom and don't buy in to the "causes"
Apparently having a "special needs baby" opens this massive, greasy, foul can of worms containing colored ribbons, organizations "working towards the cure" that everyone thinks we should join or support, and inspirational jargon that basically reduces an entire life (yours) to a problem that we will bravely overcome. I absolutely understand the comfort that people get from plastering their cars and lives with inspirational slogans, bumper stickers, participation in charity walks and events, and generally surrounding oneself with acknowledgment that others are also suffering in the same way: I really do. I, on the other hand, would sooner chop off my own leg than spend the rest of my life campaigning for and covering my life with congenital heart defect awareness. This is some shit we need to get through, and while it won't ever really go away, I absolutely intend for our lives to be governed by who we are and what we do as a family, not some medical condition we are unlucky enough to need to deal with.
Step #4: Learn what's worth learning
I'm convinced that medical information on the internet is the modern-day equivalent of the pamphlets churches would pass out in olden times cautioning citizens away from the evils of, oh, say, reading anything but the bible, or consorting with gypsies, or...I dunno...keeping cats as pets. According to the internet, I have had countless brushes with death because I do such insanely dangerous things as eat french fries and own cats. I could have already contracted cytomegalovirus, passed it on to you, and soon poof! We're both dead! Everyone who I've shared your situation with has started to suggest online resources, and frankly, I just don't want to go there. The second I start trying to research medical stuff out on my own, I'll end up convinced that your feet are going to fall off as a complication of one of your surgeries. If I have questions, I'll ask doctors. If I still have questions, I'll ask other doctors. Period.
Step #5: Grow a pair
Something I imagine that every pregnant woman can agree on is that some people assume it is their place to flat-out tell you what to do, how to do it, and why doing anything else is wrong/stupid/deadly. I've ranted about this before, and will surely do so more in the future. When you add a significant medical condition to the mix, it just gets worse. Now, even the most previously considerate individuals are starting to demand that I talk with doctors in just such a fashion, make contact with these specialists they know, submit to (or fight back against) this particular medical plan...and we haven't even know about your condition for a full week! That's just the medical stuff: the same onslaught of commentary has started over all the lifestyle alterations we're supposed to make. My recourse? Take the polite smiling and nodding that I was doing before, and kick it up about a thousand notches. I'm a few days away from cultivating happy music to play in my head to drown out the imposing commentary. When it comes to conversations that your father and I actually need to have (with doctors, employers, specialists, etc...), I'm going to take advantage of the fact that you have a pair of gonads already to act like I've got a pair of my own. If we need something done, we will fight like hell to get it. If we disagree with something, someone had damn well better be prepared to explain it - thoroughly, and to our satisfaction. If something makes us uncomfortable, so help me I will gut someone to get it resolved.
All my dreams - nay, expectations - of a natural and nurtured, comfortable and casual birth have basically been tossed out the window. Here's where I really want to shit on all my previous judgments about the crappiness of medically-driven births and hope that all my theories about separation at birth being the root of all human evils were just hippie pipe dreams. All we can do is love the hell out of you from a distance when that's where we are, and give you every bit of our affection when we're allowed to be close. Breastfeeding might be a bitch, but it sounds like getting you to eat at all in the beginning might be tough, so I promise not to take it personally.
With an actual diagnosis to work with and at least a someone concrete prognosis (which is good!), we're kind of in limbo. I guess we're pretty crazy lucky to have found out about this before you were born so we know who to have on hand, what to expect, what kind of support system to have in place...all that important stuff. At the same time, now we've also got four and a half months of just bracing ourselves and waiting for impact. No, wait a second: we've got four and a half months to learn just how we need to kick ass and take names so you get exactly what you need, and we stay sane and happy in the process. I'm working on a five step plan to achieve maximum awesomeness, so here's my draft:
Step #1: Get Feet on Ground
I've had half a dozen people tell me how incredibly I'm handling this. Okay, sure, I might not have a reputation for being the most emotionally stoic human being on the planet, but this is the first time my child has been in the mix. I think your Dad is kind of in the same place: this is possibly the shittiest situation either of us has ever been in, but our reaction so far has been to just bunker down and deal with it. This might suck, but it will only NOT suck once the situation is resolved. Period. In any case, we get you out of it, so basically any crappiness that happens along the way is just some crap to wade through and leave behind.
Step #2: Muster the Troops
Okay, I've ranted against Facebook before, and will do so again, but it's been pretty cool seeing people jump to offer their support and good wishes after we finally posted some news about you. I think my favorite comment so far was from a grad school friend: "I have heard it said many times that babies choose their parents based on things they need and things they need to learn in this life. I am sure that Batman has chosen you and Ryan cause he knows that you guys will give him what he needs. You two are the only ones that will be absolutely perfect for him." Fuckin' a right! Even if a lot of the people who've jumped forward with kind words will only continue to offer those, that's a huge help. We know we have a shitton of awesome people who will help us in a LOT of ways, and you are one lucky little Batman to come into a world filled with so many people who will almost definitely punch a medical professional for you, should a medical professional need punching.
Step #3: Eschew martyrdom and don't buy in to the "causes"
Apparently having a "special needs baby" opens this massive, greasy, foul can of worms containing colored ribbons, organizations "working towards the cure" that everyone thinks we should join or support, and inspirational jargon that basically reduces an entire life (yours) to a problem that we will bravely overcome. I absolutely understand the comfort that people get from plastering their cars and lives with inspirational slogans, bumper stickers, participation in charity walks and events, and generally surrounding oneself with acknowledgment that others are also suffering in the same way: I really do. I, on the other hand, would sooner chop off my own leg than spend the rest of my life campaigning for and covering my life with congenital heart defect awareness. This is some shit we need to get through, and while it won't ever really go away, I absolutely intend for our lives to be governed by who we are and what we do as a family, not some medical condition we are unlucky enough to need to deal with.
Step #4: Learn what's worth learning
I'm convinced that medical information on the internet is the modern-day equivalent of the pamphlets churches would pass out in olden times cautioning citizens away from the evils of, oh, say, reading anything but the bible, or consorting with gypsies, or...I dunno...keeping cats as pets. According to the internet, I have had countless brushes with death because I do such insanely dangerous things as eat french fries and own cats. I could have already contracted cytomegalovirus, passed it on to you, and soon poof! We're both dead! Everyone who I've shared your situation with has started to suggest online resources, and frankly, I just don't want to go there. The second I start trying to research medical stuff out on my own, I'll end up convinced that your feet are going to fall off as a complication of one of your surgeries. If I have questions, I'll ask doctors. If I still have questions, I'll ask other doctors. Period.
Step #5: Grow a pair
Something I imagine that every pregnant woman can agree on is that some people assume it is their place to flat-out tell you what to do, how to do it, and why doing anything else is wrong/stupid/deadly. I've ranted about this before, and will surely do so more in the future. When you add a significant medical condition to the mix, it just gets worse. Now, even the most previously considerate individuals are starting to demand that I talk with doctors in just such a fashion, make contact with these specialists they know, submit to (or fight back against) this particular medical plan...and we haven't even know about your condition for a full week! That's just the medical stuff: the same onslaught of commentary has started over all the lifestyle alterations we're supposed to make. My recourse? Take the polite smiling and nodding that I was doing before, and kick it up about a thousand notches. I'm a few days away from cultivating happy music to play in my head to drown out the imposing commentary. When it comes to conversations that your father and I actually need to have (with doctors, employers, specialists, etc...), I'm going to take advantage of the fact that you have a pair of gonads already to act like I've got a pair of my own. If we need something done, we will fight like hell to get it. If we disagree with something, someone had damn well better be prepared to explain it - thoroughly, and to our satisfaction. If something makes us uncomfortable, so help me I will gut someone to get it resolved.
Monday, September 12, 2011
Monday
We're going to see the pediatric cardiologist in a matter of minutes. Here's where I get all manner of superstitious. Am I wearing the right...whatever? Did I say whatever I was supposed to that will make this all magically okay? Did I pay enough attention to this whole situation, or should I have done more somehow? Is there ANYTHING I could do or could have done before right now to ensure that you are healthy, safe, and capable of starting your life as the wriggling, crying, perfect little bundle of human we've wanted you to be?
The waiting has been torture. I've been pretty much shut down all weekend, and today was basically a force of repression and adrenaline. We'll know within the next few hours at least some of what's up, most hopefully that we can just go ahead with everything planned as normal, but at least hopefully that everything will end up okay. A coworker told me something today that is going to be my new mantra from here on out: the universe will not give me anything I can't handle.
The waiting has been torture. I've been pretty much shut down all weekend, and today was basically a force of repression and adrenaline. We'll know within the next few hours at least some of what's up, most hopefully that we can just go ahead with everything planned as normal, but at least hopefully that everything will end up okay. A coworker told me something today that is going to be my new mantra from here on out: the universe will not give me anything I can't handle.
Saturday, September 10, 2011
Saturday
Oh, kiddo.
I don't even have words for what's going through my head right now. In the last three days, I've felt like I was going to implode - just collapse in on myself and disappear into nothing, like I am a time bomb just waiting for impending disaster, and like there is no hope in the universe for anything good to ever happen again. We went in for the ultrasound that was supposed to be a simple "yup, there's your kid's junk, everything looks great, have an awesome rest of your pregnancy" and then done...but you know it's a bad sign when the technician wants the doctor to come look at something because she has "some concerns." Some dude I'd never seen or heard of before comes in, looks at your little heart (which, by the way, was maintaining a perfect heartbeat and looked like it was doing its job just fine), and tells us after five or more minutes of staring and readjusting and staring again that he's found something.
It's a congenital heart defect. We don't know what kind, what we'll need to do to repair it, or even how serious it is. The fact that things like surgery (even many surgeries), birth not in a birthing center but at the kind of scary hospital-flavored hospital (within arm's reach of a NICU), and the possibility of additional problems (not least of which being the possibility of chromosomal abnormalities) even came up makes me wonder: do doctors who have to share bad news with parents HAVE to share the worst-case scenarios just so everyone is prepared? Is this a strategy to make those parents with kids who will ultimately be fine with minimal intervention that much happier when the diagnosis is not terrifying, and to make parents with kids who will be seriously messed up grateful that at least that first doctor was honest with them? Do they just tell everyone how bad it could, possibly, maybe be to scare them into enough testing to conclusively prove what's wrong? ...or is there really something seriously, SERIOUSLY wrong with you?
We did find out that you're a boy, which is (quite frankly, and for what I believe to be totally legit reasons) exactly what we'd hoped. I mean, of course we'd have been happy with a girl, but we were really excited to see that little set of junk between your legs. One of the most heartbreaking things about this whole situation is that we can't even be excited about that. We're both so completely caught up in fear, uncertainty, and the gut-wrenching horror that can only be the obsessive protectiveness that parents feel for their children. It's sort of amazing how quickly both your Dad and I shifted gears into parent mode. I mean, I'm having an amniocentesis on Monday. Seriously?!?! That might be the single most horrifying, awful thing I can think of having done to my body. I'm honestly more okay with the idea of having a c-section than just one poke with one (humongous) needle, but because it's for you, I'm just fucking doing it. I hesitated and I talked with our midwives about it, but I knew basically from the beginning that it would have to happen...and because it's for you, I will.
Speaking of your Dad, however, he has been a kind of amazing I never realized that another human being could be for another. I've seen my parents help (and sometimes drag) each other through some pretty horrendous times, but I'd never been part of a situation - or relationship - where that kind of shared endurance and support is so abundant and powerful. I know we're only a few days in to this situation, but he has put forth one hell of a start, and I know he's not backing off. I'm really worried that if this gets worse (if it is worse, and if it turns into anything bigger than a best-case scenario), I'll crumble...not for lack of support (and not just from your Dad), but for sheer lack of capacity for what something wrong with you will bring.
Nearly every single time I've felt you kick in the last three days has been agony: there you are, showing up nearly perfect on an ultrasound and meeting every growth and developmental marker there is, except for (hopefully just one) big one. (You also have a double vessel umbilical cord, which is presumably a far less substantial problem, given the fact that it wasn't even mentioned until we were literally walking out of the room.) It's like you're telling me that you're strong enough for whatever: you're practically kicking some of my organs out sometimes, and I'm surprised you haven't started tap-dancing on my bladder yet. You move all the time, and that heart rate...I can't stop myself coming back to the fact that your heart rate sounds and looks so perfect. Because your Dad technically has a heart problem, too (although he's supposedly outgrown it, and it was the kind of thing that almost didn't require attention or follow-up after he was pretty little), he was apparently scared from the beginning that he would have passed his on to you somehow. Hearing that heart beat - which has been progressing normally from the first time we heard it, incidentally - had pretty much assuaged his biggest fears.
Here's where we hope. It's Saturday, September 10th, 2011. I'm not posting this right away because it has just been too painful for either of us to talk about it to more than just a very scant handful of people, and some of them were purely out of obligation. I've told a few coworkers, mostly because I would have exploded at work without someone knowing how destroyed I've been, and of course we've both told our parents. I told your Aunts Anna, Erin, and Leah, and your Dad told your Uncle Cameron. He might talk to a few other friends, but at least until after Monday, no one else is getting into the loop. It just hurts too much to say out loud that something might be wrong with our Batman. I'm leaving school early on Monday for our appointments with the pediatric cardiologist and the lab for the amniocentesis, and I'm staying home on Tuesday regardless of the results. Your Dad and I have spent a lot of time since Wednesday sitting on the couch holding on to each other, so I'm really hoping that some radiant love and intention have soaked over to you, and we walk away Monday with everything feeling okay. I'm not looking for perfect at this point (though I sure as hell wouldn't complain), but I need us to at least be okay.
I don't even have words for what's going through my head right now. In the last three days, I've felt like I was going to implode - just collapse in on myself and disappear into nothing, like I am a time bomb just waiting for impending disaster, and like there is no hope in the universe for anything good to ever happen again. We went in for the ultrasound that was supposed to be a simple "yup, there's your kid's junk, everything looks great, have an awesome rest of your pregnancy" and then done...but you know it's a bad sign when the technician wants the doctor to come look at something because she has "some concerns." Some dude I'd never seen or heard of before comes in, looks at your little heart (which, by the way, was maintaining a perfect heartbeat and looked like it was doing its job just fine), and tells us after five or more minutes of staring and readjusting and staring again that he's found something.
It's a congenital heart defect. We don't know what kind, what we'll need to do to repair it, or even how serious it is. The fact that things like surgery (even many surgeries), birth not in a birthing center but at the kind of scary hospital-flavored hospital (within arm's reach of a NICU), and the possibility of additional problems (not least of which being the possibility of chromosomal abnormalities) even came up makes me wonder: do doctors who have to share bad news with parents HAVE to share the worst-case scenarios just so everyone is prepared? Is this a strategy to make those parents with kids who will ultimately be fine with minimal intervention that much happier when the diagnosis is not terrifying, and to make parents with kids who will be seriously messed up grateful that at least that first doctor was honest with them? Do they just tell everyone how bad it could, possibly, maybe be to scare them into enough testing to conclusively prove what's wrong? ...or is there really something seriously, SERIOUSLY wrong with you?
We did find out that you're a boy, which is (quite frankly, and for what I believe to be totally legit reasons) exactly what we'd hoped. I mean, of course we'd have been happy with a girl, but we were really excited to see that little set of junk between your legs. One of the most heartbreaking things about this whole situation is that we can't even be excited about that. We're both so completely caught up in fear, uncertainty, and the gut-wrenching horror that can only be the obsessive protectiveness that parents feel for their children. It's sort of amazing how quickly both your Dad and I shifted gears into parent mode. I mean, I'm having an amniocentesis on Monday. Seriously?!?! That might be the single most horrifying, awful thing I can think of having done to my body. I'm honestly more okay with the idea of having a c-section than just one poke with one (humongous) needle, but because it's for you, I'm just fucking doing it. I hesitated and I talked with our midwives about it, but I knew basically from the beginning that it would have to happen...and because it's for you, I will.
Speaking of your Dad, however, he has been a kind of amazing I never realized that another human being could be for another. I've seen my parents help (and sometimes drag) each other through some pretty horrendous times, but I'd never been part of a situation - or relationship - where that kind of shared endurance and support is so abundant and powerful. I know we're only a few days in to this situation, but he has put forth one hell of a start, and I know he's not backing off. I'm really worried that if this gets worse (if it is worse, and if it turns into anything bigger than a best-case scenario), I'll crumble...not for lack of support (and not just from your Dad), but for sheer lack of capacity for what something wrong with you will bring.
Nearly every single time I've felt you kick in the last three days has been agony: there you are, showing up nearly perfect on an ultrasound and meeting every growth and developmental marker there is, except for (hopefully just one) big one. (You also have a double vessel umbilical cord, which is presumably a far less substantial problem, given the fact that it wasn't even mentioned until we were literally walking out of the room.) It's like you're telling me that you're strong enough for whatever: you're practically kicking some of my organs out sometimes, and I'm surprised you haven't started tap-dancing on my bladder yet. You move all the time, and that heart rate...I can't stop myself coming back to the fact that your heart rate sounds and looks so perfect. Because your Dad technically has a heart problem, too (although he's supposedly outgrown it, and it was the kind of thing that almost didn't require attention or follow-up after he was pretty little), he was apparently scared from the beginning that he would have passed his on to you somehow. Hearing that heart beat - which has been progressing normally from the first time we heard it, incidentally - had pretty much assuaged his biggest fears.
Here's where we hope. It's Saturday, September 10th, 2011. I'm not posting this right away because it has just been too painful for either of us to talk about it to more than just a very scant handful of people, and some of them were purely out of obligation. I've told a few coworkers, mostly because I would have exploded at work without someone knowing how destroyed I've been, and of course we've both told our parents. I told your Aunts Anna, Erin, and Leah, and your Dad told your Uncle Cameron. He might talk to a few other friends, but at least until after Monday, no one else is getting into the loop. It just hurts too much to say out loud that something might be wrong with our Batman. I'm leaving school early on Monday for our appointments with the pediatric cardiologist and the lab for the amniocentesis, and I'm staying home on Tuesday regardless of the results. Your Dad and I have spent a lot of time since Wednesday sitting on the couch holding on to each other, so I'm really hoping that some radiant love and intention have soaked over to you, and we walk away Monday with everything feeling okay. I'm not looking for perfect at this point (though I sure as hell wouldn't complain), but I need us to at least be okay.
Sunday, April 3, 2011
The Lesser-est of Two Evils
When I was in elementary school, there were two bus stops near my house. I did not have the vocabulary to accurately describe the difference between the two stops until I read "The Odyssey" in ninth grade. From the safety of my house - squarely centered on the block - I could choose to brave either Scylla or Charybdis. Despite Odysseus' heroic transcendence of both obstacles, when I was eight, no one had thought to share a copy of his tribulations with me. I was left to flummox with the decision, and, as my panicked, undeveloped self knew then, there really was no right one.
At one end of the block was the Scylla-like hell-beast I will lovingly title "Jerk-face." Jerk-face was the youngest of three boys, and although he was only two years older than me, he was a leviathan. He towered nearly six feel tall, and had a gut that hung like a damp sack of rice over the waistband of his sweatpants. Jerk-face ate anywhere from two to four packages of either Pop-Tarts, toaster pastries, or some other pre-wrapped breakfast pastry product for breakfast, and always littered his wrappers on the lawn of the sweet old couple whose house was on the corner. He and I were most often alone for the five to fifteen minutes before the bus arrived, and he was the type of bully who presented an angelic face to adults, then turned to show you the glowing embers of hell-fire in his eyes behind their backs.
Unless I timed my arrival to be almost concurrent with that of the bus, Jerk-face took advantage of every second of our time together to injure me in ways that were virtually undetectable by the school nurse or my mother when I went to one for treatment. Jerk-face could punch literally anywhere on a prepubescent body without leaving a mark. He could force you to eat anything from old leaves to small rocks (although I developed a strategy of hiding stuff in my cheeks that probably saved me from a lot of potentially dubious snacks shared with me by college classmates). Jerk-face's worst punishments came way after the fact: he would blame me for any perceived slight to his appearance or intellect, none of which I was stupid enough to perpetrate in the first place, then attack me during recess, while I was playing in my yard on the weekend, or really any time adults were not present. I was pelted with BB's, splattered with mud, pushed over onto asphalt, and forced to punch visiting friends while he watched, cackling like a hungry ghost starving for the nourishment only my suffering would provide.
The Charybdis at the other end of the block presented a far more subtle danger. I'll call them "Demon A" and "Demon B." Demon A was a scrawny, freckled, baseball cap-wearing little asshat who most enjoyed teasing me for my weight and not-so-stylish second-hand clothes. Demon B was the kind of chubby that adults still considered "baby fat," and he liked to bump me with his gut while telling me how much everyone else in our class hated my guts (oh, the irony). Since both boys were in my grade, some combination of us ended up in the same classroom every year, and in fourth grade, we were all in Mr. O'Brien's class. He was an exceptional teacher - really top-notch - but he suffered a back injury mid-year and was temporarily replaced by a woman who utterly ignored the obvious bullying happening in the room.
My life rapidly became a living hell. Not only was my awesome teacher no longer there to get my back, but my mother decided that I really needed to make nice with the Demons since we had to spend the whole year together. She called the Demons' parents, complained about the bullying, and suddenly everything they did grew quieter, subtler, and almost impossible for an adult to overhear or notice. Nice one, Mom.
What could I have done, Batman? I had one obvious choice. I started lurking in the whatever shrub or bush looked densest near either bus stop, and I would leap out and bolt for the bus as soon as either the Demons or Jerk-face had already gotten on. I did miss the bus a few times this way because my backpack or clothes got caught in the branches, but it was totally worth it. Was this necessarily the best problem-solving strategy? Probably not. Did I survive until middle school with a drastic reduction in social and physical abuse? Heck yeah. This, Batman, is the kind of conflict avoidance that yields the most positive results: if you know someone will just sucker-punch you in the solar plexus when you try to overcome their douchebaggery, it's better to hide in the bushes and know that their uppance will come.
The real win came my last week of high school when I learned that Demon B hadn't been accepted to ANY colleges because of his hideous disciplinary record, and that Jerk-face (who had graduated before us) had dropped out of school and was employed as a paper pusher in some hideously boring government basement. Demon A, on the other hand, approached me at graduation to ask if I thought it was as funny as he did that he used to torture me so. I told him it wasn't funny at all, and he seemed confused. In front of his current girlfriend (who I gather dumped him during their first semester of college), I asked him if he thought it was funny as funny as I did when he crapped his pants in kindergarten. Surprisingly, he did not agree.
At one end of the block was the Scylla-like hell-beast I will lovingly title "Jerk-face." Jerk-face was the youngest of three boys, and although he was only two years older than me, he was a leviathan. He towered nearly six feel tall, and had a gut that hung like a damp sack of rice over the waistband of his sweatpants. Jerk-face ate anywhere from two to four packages of either Pop-Tarts, toaster pastries, or some other pre-wrapped breakfast pastry product for breakfast, and always littered his wrappers on the lawn of the sweet old couple whose house was on the corner. He and I were most often alone for the five to fifteen minutes before the bus arrived, and he was the type of bully who presented an angelic face to adults, then turned to show you the glowing embers of hell-fire in his eyes behind their backs.
Unless I timed my arrival to be almost concurrent with that of the bus, Jerk-face took advantage of every second of our time together to injure me in ways that were virtually undetectable by the school nurse or my mother when I went to one for treatment. Jerk-face could punch literally anywhere on a prepubescent body without leaving a mark. He could force you to eat anything from old leaves to small rocks (although I developed a strategy of hiding stuff in my cheeks that probably saved me from a lot of potentially dubious snacks shared with me by college classmates). Jerk-face's worst punishments came way after the fact: he would blame me for any perceived slight to his appearance or intellect, none of which I was stupid enough to perpetrate in the first place, then attack me during recess, while I was playing in my yard on the weekend, or really any time adults were not present. I was pelted with BB's, splattered with mud, pushed over onto asphalt, and forced to punch visiting friends while he watched, cackling like a hungry ghost starving for the nourishment only my suffering would provide.
The Charybdis at the other end of the block presented a far more subtle danger. I'll call them "Demon A" and "Demon B." Demon A was a scrawny, freckled, baseball cap-wearing little asshat who most enjoyed teasing me for my weight and not-so-stylish second-hand clothes. Demon B was the kind of chubby that adults still considered "baby fat," and he liked to bump me with his gut while telling me how much everyone else in our class hated my guts (oh, the irony). Since both boys were in my grade, some combination of us ended up in the same classroom every year, and in fourth grade, we were all in Mr. O'Brien's class. He was an exceptional teacher - really top-notch - but he suffered a back injury mid-year and was temporarily replaced by a woman who utterly ignored the obvious bullying happening in the room.
My life rapidly became a living hell. Not only was my awesome teacher no longer there to get my back, but my mother decided that I really needed to make nice with the Demons since we had to spend the whole year together. She called the Demons' parents, complained about the bullying, and suddenly everything they did grew quieter, subtler, and almost impossible for an adult to overhear or notice. Nice one, Mom.
What could I have done, Batman? I had one obvious choice. I started lurking in the whatever shrub or bush looked densest near either bus stop, and I would leap out and bolt for the bus as soon as either the Demons or Jerk-face had already gotten on. I did miss the bus a few times this way because my backpack or clothes got caught in the branches, but it was totally worth it. Was this necessarily the best problem-solving strategy? Probably not. Did I survive until middle school with a drastic reduction in social and physical abuse? Heck yeah. This, Batman, is the kind of conflict avoidance that yields the most positive results: if you know someone will just sucker-punch you in the solar plexus when you try to overcome their douchebaggery, it's better to hide in the bushes and know that their uppance will come.
The real win came my last week of high school when I learned that Demon B hadn't been accepted to ANY colleges because of his hideous disciplinary record, and that Jerk-face (who had graduated before us) had dropped out of school and was employed as a paper pusher in some hideously boring government basement. Demon A, on the other hand, approached me at graduation to ask if I thought it was as funny as he did that he used to torture me so. I told him it wasn't funny at all, and he seemed confused. In front of his current girlfriend (who I gather dumped him during their first semester of college), I asked him if he thought it was funny as funny as I did when he crapped his pants in kindergarten. Surprisingly, he did not agree.
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