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. 

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