Once: Surveying the Wreckage

In June of this summer, two Metro trains crashed a few miles from my house-- and just two metro stops from the one I use on the Red Line to get into downtown and to work. Friends in this part of town, as I did, were quick to tweet and post subject lines on Facebook about their safety; there came with each one a relief and thankfulness that those you loved were safe and unhurt. When we discovered that some people didn't make it (and my heart is with, even so much more now, those people who did lose loved ones in the crash), we held tighter to those we loved, and thanked ourselves for luck that kept us off that train that day. The whole city jittered for days, feeling the wreckage, the lives lost in the accident, and the waiting up for explanations.

Nothing is back to normal--long waits for trains and sweltering stations. The explanations have been numerous but also contradictory. Human error, machine error, system error. The old tracks hot in the summer's uncompromising heat have done worse than expected in aftermath, with more even delays and problems compiling the damage done.

Metro has now starting using Twitter to inform passengers of trouble. But it forgets to pay attention to the character limit, and the messages come truncated, usually right at the moment of advice for alternate measures. "No line: Due to mechanical difficulties, all the station's entrance escalators are out of service. The street elevator is operational. Shut" one said, absent of context or instruction. Another: "Red Line: Forest Glen station is temporarily closed due to a power outage. Shuttle bus service has been requested. Customers may utilize t." Utilize what? Go where? Powerless.*

It's enough to make you feel like the entire system is falling apart, the city grinding to a halt with nothing working right and everything--setting out into the day, getting anywhere, coming back home, safely--made that much more difficult.

It's not as if I don't already feel like the whole world has collapsed. A dazed wandering through a broken landscape.

It's not as if I don't already hate the way news of what went wrong only comes in shards from some whole I can't possibly put together. These broken bits of news come from different quadrants of town, all of them incomplete, all of them about horrible danger and wreckage and death. We are the family, this time, that got the most horrible of news.

The radiologist's report from Children's Hospital in Northeast DC, after a suspicious, small cyst on the brain at the 20-week ultrasound called for a more detailed ultrasound and an MRI, which revealed that whole structures of the brain were missing and the left hemisphere was in a terrible, terrible shape. (It is too awful, right now, to write about to supply the medical details, those tell-us-nothing names of conditions that may or may not have played a role. Ten or so possible diagnoses are listed here and there in the report with nothing conclusive offered.) The explanations we received at the time of the MRI first from the radiologist and then from the genetics counselor and the geneticist of how very serious and severe the problem, that thought they could not name a diagnosis, they could all agree that there was no hope for this child, even though the condition might not be "lethal," to truly live. Then the doctor's report to us at the time of the birth at George Washington Hospital, in Northwest DC, that something may have gone wrong with the placenta by his way of explanation. The phone call yesterday, from GW, with the news that the chromosomal testing and microarray had turned up normal, the genetics counselor in a hurry to get off the phone, clipped and bright with the news that nothing genetic was wrong.

But the whole of it was and IS wrong. So very wrong. Everything that happened to our son is wrong, wrong, wrong. And no one will tell me anything coherent or explain anything to me. Each of these doctors at different outposts with his or her little piece of news but not a one who will put it together.

Next week I will have to start making phone calls, find some strength that this week I can't fathom ever again having, to become the persistent, nervous, agitated, mean-as-a-snake person until someone with medical knowledge agrees to sit down with me in conversation. Whomever wants to tell me they just don't know, that we're in some outpost of modern medicine where the research just hasn't caught up to our reality, then tell me that face to face. But from there I want to know more certainly what it's not, what they could know, otherwise. I want to know more about what they might even suspect. I want the great and powerful Oz of modern medicine to tell me not that our situation is rare and difficult to diagnose because it doesn't fit neatly into a category but why, exactly, this severe a fetal anomaly can't be recognized definitively. I want to sit there with my pen and paper, dutifully, for a lecture in Brain Development 101 and then be given a detailed update of all the latest research on the fetal brain, from every publication from JAMA to Witch Doctory Quarterly.

I want someone, anyone besides my husband and I to try to put what wreckage we're left with, if not back together, then at least into some medical sense of what was its cause and how we could possibly reckon with it.

Because the whole of my son's body was just that--whole. He was beautiful. If you didn't know how very wrong the brain development had gone underneath that sweet round of a head and skull, you would have thought, perfect. The doctors told us this is, sadly, not uncommon--that the baby can grow physically normally even when there are catastrophic genetic or developmental problems. That what is terribly broken might appear, on the surface, to be completely whole.

I don't wish for something to be wrong with me or my husband--some genetic problem individual or shared that might cause us further heartbreak when we try again to bring a baby into this world. I don't wish that my son's body had looked anything other than the beauty of his own, real shape. Deep down, I know it wouldn't really be a comfort to stick a diagnostic term on his loss. But it compounds the feeling that I am just a person to which bad things happen. That if something bad can happen, it will. The minute you might think things couldn't get worse, that you'd paid your dues, you're a dupe, because there's always something worse ahead.

But most of all, beyond the rampant self-pity I need to have for myself right now, it's for him, for L., I want some explanation. Because for there to be none, for there to be no semblance of cause other than bad chance, it's too horrible to bear, too hard to survive him in a world that can do no better than that for him.

I am so deeply tired and sad and furious, exhausted in this heat wave in this broken city with this broken body and broken soul. I know it's a risk to write any of this publicly, which only makes me sadder, more tired, more furious. I have my head in my hands, cradling myself, wandering half-dead in this place where my life collided and buckled and tore open, news of what happened coming in and out of my head in snippets of cut-off, half-heard conversation, pushed out of concentration then by the roar of grief that arrives and is followed immediately by dead silence, until I can do nothing, really, besides walk further and turn back and walk its length again and again, measuring the wreckage, knowing it has no recognizable name, recognizing the terror that this is where I now live.

*Incomplete Metro tweets compiled by <http://unsuckdcmetro.blogspot.com/> and highlighted in today's Washington Post.

Comments

When there arent answers, even though you know they will never be "good enough", it just makes things so much harder to process. Have you gotten copies of your medical records from your son's birth? Those may be a start for you to do research on your own, although it is hard. And you will have to get snippy with people. People want to forget and pretend that babies dont die. When you bring it up and want answers, some of them are down right mean. But it is worth it. As parents, we need to know the whys. We need to know everything. Even when there is no reason why.

Sending you hugs.

Posted by: Michele | August 22, 2009 at 11:23 AM

I am so very, very sorry. I'm sorry about your beautiful baby. I'm sorry you have no answers. Keeping you in my thoughts and prayers and hoping you find comfort somehow. xxxx

Posted by: Sarah | August 23, 2009 at 08:41 AM