Friday, April 20, 2012

...and then my world imploded.

Hudson, you came with a crappy battery. We found out over the course of the last few weeks that your heart is just not strong enough or stable enough to last on its own, and you have been listed for a heart transplant. Your Dad and I have essentially moved in to the hospital with you (sleeping a few torturous blocks away in "patient family housing," which is basically a dorm), and we're just sitting and waiting for a phone call that will begin a domino effect liable to topple the rest of our lives. Even in a best case scenario, we will need to stay in Boston - in or near the hospital - for a few months after you get your new heart, and you will have a lifetime of medications and unbelievably frequent doctor visits, as well as a veritable expiration date on your heart. This whole process will need to happen again. In a worst case scenario...I don't want to think about worst case scenarios. There are too many of them.

I'm not honestly sure what to think of this whole situation. Right now - on heart-stabilizing IV drugs, a little bit of oxygen, feeding that basically doesn't require you to do any work, and anal-retentive monitoring of every internal and external system you have - you look really good. Some days your body seems to do a better job equalizing itself than others, but you are smiling a ton, loving attention and snuggles, and generally being your normal self. It sure doesn't look like you wouldn't survive long outside the hospital. Still, the reality of that fact has not escaped me. As soon as we got to Boston (in the middle of the night, with you in such total distress that your cardiologist didn't think you could survive a month waiting for a transplant), you stabilized so fast that we doubted for a few days whether transplant was even going to be our necessary course of action. I'm still not sure I ever had real hope for any outcome other than this. Your life so far has been so riddled with uncertainty that even when we got you home a few weeks ago and everything seemed to be going well, I was still waiting for the other shoe to drop.

Your Aunt Erin and Aunt Anna have both said particularly poignant and excruciatingly important things to me since we got here. Erin noted that my whole life has basically been boot camp for just this situation, and she's right. My life has carefully hardwired me to just buckle down and deal with even the most terrifying of medical situations, and to place almost unbelievable trust in medical science. Being a teacher has made me patient to a point that my teenage self would never believe, and especially being a teacher in a sort of sketchy district has increased my resourcefulness and ability to just put up with shit. Add to that a very conscientious effort to get over any sort of relationship craziness I may have loaded on myself over my dating years, and I'm pretty much ready to sit and deal with anything your little body needs us to do. I don't like it, and I'd obviously rather things had gone just about any other way, but this is what we've got, and that's just how it is. We deal.

The one piece of this puzzle that I hadn't been able to reconcile was the fact that some other baby has to die in order for you to survive. Some other family has to endure the loss of their child (probably suddenly, probably catastrophically) so that my family gets to keep you - so that I get to keep you. Your Aunt Anna made the inarguable point that no matter how it affects us, that other child was going to die anyhow. We're not making the choice to end another life so that yours can continue; we're just taking life from that loss. I hate that I constantly have a wish in the back of my mind for a new heart to come your way because of what that means, but I have to look at this as creating meaning from tragic circumstances. You are going to be a part of rebalancing the order of things, however unnatural the means.

Hudson, you have been the center of my universe since even before you were born, but since we've it's as if someone put a pair of blinders on my head. All of a sudden, it seems like every bit of energy I have, every conversation that happens, every little thing that happens is focused on you. You're like a black hole, pulling all my decisions towards you and soaking up any light that comes from anywhere else. (I don't mean to sound like you are any kind of burden - weirdly, this is all we've ever known you to be, and we love you painfully much, so it's no hassle or fuss at all.) Knowing how delicate you are just makes it all the more important to keep my focus completely on you. This has made a lot of decision-making easy; of course I'm going to do everything I can to extend my leave at work, I'll happily eat cafeteria food for months, and yes, we will gladly live in a shoebox as long as we get to stay close by.

As soon as you were born, the sheer volume of love I felt for you was intimidating, but now it's gotten almost scary. I've grown deadly serious, defensive, and even sometimes aggressive when it comes to your care, and dark, unsympathetic, and bitter when it comes to most other people in general. It's not particularly safe to keep this perspective (especially as a teacher, and someone who generally considers herself to be a decent person), but I'm worried. I'm already so jaded that it will be a substantial uphill battle to bring myself back to a "normal" state of empathy. Somehow (and this may be your black hole effect), I am still finding incredible joy in you. You've been holding your head up and looking around tons, grabbing onto and holding fingers, hair, clothes, small toys, and - of course - your assorted tubes and lines, and being wonderfully smiley, conversational, and snuggly. As in Portland, everyone here seems impressed with how resilient, friendly, and even-tempered you are, and rightfully so. I think I'll be okay as long as I can still be made insanely happy by you, even if so much else is so dark.

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