I downplayed the terror I felt because I had to. Because I couldn’t just
lose it in front of him. Because he knows it’s serious, but he knows I
will keep him safe. And that “keeping him safe” part falls apart a bit
when I can’t keep it together in front of him at the precise moment he
feels his life is really, actually in danger.
******
I
have never played a Wii before (yep, I’m old and boring). But the
neurology team thinks it might be a good idea to help get him active, to
induce a seizure. So far, he’s only had 2, and one didn’t get caught on
camera since it happened in the bathroom.
So we scroll through
the games, all pretty kid-oriented – this is a children’s ward, after
all. We settle on a variety of Mario games. He is beating the pants off
me as usual…now, I can’t remember if it was the “riding dolphins,
jumping through hoops” game or the paint-gun-splat game. But we are
laughing, and having fun, standing there, waving controllers like happy
idiots. In the back of my mind I think: "It's ok if he doesn't have
seizures. We're having fun anyway. We're bonding. We're being mother and
son. But I hope he has a seizure, and I hope he doesn't hurt himself."
BOOM.
He
is down. First thought: good. He’s having a seizure. Brian, press the
button. He presses the button. We’re on the floor with him, keeping his
head from hitting the ground. I am sitting on the floor behind his head;
he is stretched out on his right side. Nurses rush in. This one is
different. He can’t respond. His eyes are tracking every which way. He
is drooling a river, and he sounds like he is choking. He’s turning
blue. He’s never done these things before. The rigid limbs, the
convulsing – these things, we know. The other stuff? Never, ever. Not
once, in the hundreds, maybe thousands, of seizures we’ve seen in the
last ten years. A doctor rushes in and tells me the blue face is because
the seizure is compressing his lungs. He promises me it will pass. I
have tears rolling down my face, and I’m trying to believe him but my
baby sounds like he is choking and he doesn't seem to be breathing. Why
isn't anyone as scared as me? But after a couple of minutes, Doctor is
proven right. Color returns. He gets quiet. And then: he can’t talk, and
he sleeps the sleep of the dead. We’ve never seen this after a seizure,
either. Doctor says it's normal; I know this - I've read all about it.
But it's not normal for HIM...but neither was that seizure.
He
has another like this in bed hours later, when I’m out taking a walk.
His dad calls me and I rush back. The seizure is over; they had to give
him oxygen. He can’t speak. He can only moan, and grimaces like he’s in
pain. I can’t get him to talk to me, and I’m terrified. He can always
talk to me right after a seizure…sometimes, during. He falls asleep,
again.
He wakes later, and he’s ok. Small seizures, a dose of rescue med and regular meds, and he’s mostly ok. No more scary seizures.
I
worried he would have a cluster today, and maybe wouldn’t get to leave
the hospital, but he’s had no seizures at all today. We are home.
I
am just now getting around to having a really good cry over all of
this. I’ve never seen any of my children in quite so dire a place
before. My head knows those seriously fucked up seizures were a result
of complete med deprivation, something that hasn't happened in 10 years.
My heart is scared it will happen when he is home, sleeping in his own
bed, a floor away from me, and I won't be able to save him.
