Grey matters

Waking up, unhappy
Originally uploaded by Citizen Rob

We wanted a black and white answer, something sure, something where we could say "That's great news," or "That sucks, I'm going to get drunk". Something where our friends and family and readers could join us in celebration or console us as we got ready for the next big fight.

The reality that most special needs parents face is cloaked in shades of grey. We finally receive the answers for which we wait for so long, and we step back and look at them and say, "Huh. Okay then. What now?"

So here's the short version. During the hour or so that Schuyler was connected to the EEG monitor, no seizures were recorded. A number of episodic abnormalities were recorded, none of them bilateral and the majority of them occurring on the left side of her brain. Probably not surprising, considering the malformation of Schuyler's brain that is the signature of her monster, but it presents an unknown wrinkle nevertheless. These abnormal episodes aren't seizures. We're not sure what they are or what effect they have on her, if any.

More questions. More grey areas.

The next step will be an extended, 48-hour EEG, in which Schuyler will spend the weekend wearing a portable unit that will record her brain's electrical activity as she goes through her day. Not sure when this will happen, but we'll find out soon. Easy, right?

I'm not sure how it's going to work, actually. Getting her to go through another EEG might be a challenge. She was having a good time for the early part of the procedure. The tech was a lot of fun, and he let her help put the leads together with the tape and ask "What is this?" about every device and doodad he used. She loved that he could mysteriously understand every Martian word she said, as if he spends his days hearing worse speech than hers from more severely broken kids, which of course he does. She didn't even mind the stinky, sticky blue goo that went in her hair beneath the sensor contacts.

But when the test began in earnest and the lights began flashing, she suddenly began to take it seriously. I think she suddenly remembered, at least on some level, the endless tests and evaluations and medical procedures that predated her diagnosis back in 2003. By the time she woke up from the sleeping portion of the festivities and rubbed her little hands (and apparently just a little of the blue goo) in her eyes, she was well and truly DONE with the EEG. It has been years since I've seen her cry like that. She actually asked for Jasper, her oldest and most beloved teddy bear, and wouldn't let go of him for the rest of the afternoon.

I think I understand what she was feeling. Even though she was probably too young to remember much of it now, I think on some subconscious level, Schuyler was suddenly back in 2003 again, being tested and evaluated and confused by medical procedures which could not have possibly made any sense to her. For a while, Julie and I were in 2003 again. Not because of anything that was actually happening today, because really, the EEG was just about the least traumatic procedure imaginable. Nothing painful except for the irritation in her eyes (and really, that was just the blue icing on the already unhappy cake at that point), and no one was treating her like a patient instead of a person. And yet, the underlying feeling was the same.

Sometimes, most of the time, the monster isn't a thing we face. It's a thing we fear, a thing that exists not as a reality, which can be shitty but is at least something that can be grappled with, but instead as a growling "What If?" in the dark. When Julie saw Schuyler asleep on that bed, her head wrapped in wires and full of innocent little girl dreams, she cried, because that's how she purges it. She cries and then she gets back to work. I sat in a chair next to the bed, the lights turned down low as I watched my little girl sleep, and for a few minutes I let myself give in to the gathering gloom, the shadow that seems to creep around Schuyler in those moments. I didn't cry so much as let the feeling grip me. Tears in my eyes, perhaps, but not crying so much as feeling that little pit as it opened again, the one that we first saw six years ago and only occasionally have to peek into.

And then we pull ourselves together, we dispel the fears, if only for a little while, and when the lights come on, the shadows recede. And we get back to work.

We ask black and white questions, and we receive grey answers in return. And when I think about it, I guess that's probably for the best. I've seen far too many families who looked for black and white answers and only got black ones. I'll take grey.