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.

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