"I haven’t really reached the anger stage" I said to my dad this morning. But then I thought about it. So not true. A reader emailed me today. Said she’s "been following the blog for years" and then, I expected to read a sympathetic story, something including best wishes, or hopes, or anything having to do with thoughts or prayers. Instead, she proceeded to ask for dating advice, actually including, "Do you know any early 30s successful Jewish guys???" You’re fucking kidding me right? "You seem to know a million men in New York from your stories." Right, ’cause I look so fetching in matchmaker garb.
My point is twofold, here. Probably not the smartest thing starting off your email saying how much you love the blog, and then obviously not reading it. And the second point is, ordinarily, I wouldn’t react this way. I wouldn’t care, I’d just assume she needed advice, was reaching out, going through her own dramas, hadn’t checked the blog, who cares. But I so wanted to lash out at someone. I didn’t go off on her because I knew, understood, that she couldn’t have read my latest posts, couldn’t know what’s going on. I did email her back telling her I so wanted to rip her a new one… but I gave her the benefit of the doubt. She apologized and admitted she hadn’t read since the advertising post. Who cares, the point is, I am pissed.
I might never learn the "whys," won’t necessarily know what caused any of this. I won’t know how any of this will affect him longterm. It’s all a waiting game, the kind of game no one wants to play. And I want to kick people in the head who say, "well, if I were you, I’d try to find out what caused this." Wow, really? Thanks. ‘Cause I never would have thought to try to get to the bottom of anything. So glad I can count on you for all the smart things you say.
I’m angry. I know because I’m sometimes that person, saying those dumb things, out of nerves, maybe, out of an attempt to be helpful. It doesn’t matter so much that it’s not. And man, then I get the stories like, "Oh, I know someone who had a shunt, but he went into a coma. But that won’t happen to Lucas." WHY THE FUCK ARE YOU TELLING ME THIS? And please, I know you mean well, but I don’t want to read about how my son is like a trip to fucking Holland. You know, there are tulips and windmills in Holland. It’s a nice enough place, even with your heart set on Italy and all. I’m angry. Forgive me for going off. I usually don’t. But are you FUCKING KIDDING ME? Parents have to take their child to the ER for emergency brain surgery, and you want to talk to me as if my son is already disabled? Talk about putting the cart before the horse. Jesus. And I really am sorry for going off. I know how awkward and hard it is to reach out to someone in pain; I know because I’m often the idiot saying the wrong thing. None of us is perfect.
I was up all night with "I think I’m going to die right here" ‘rhea. Cramping and sweats. I am exhausted and strung out now. I have a leaden knot buried in there, barreling and tightening. Every bit of me is clenched. I keep wringing my hands in the air, hoping to release some of it. I’m afraid to leave the house for a walk, terrified I’ll miss something. "Take care of yourself, so you can take care of him." I know. And I understand when the plane goes down, I’m to put the oxygen mask on myself before attending to others. I get it. I believe it. But right now, I can’t do it. I just can’t.
I’m certainly not playing the whole "why me?" card. I don’t think this is some kind of test from God. I don’t think it works that way. When it’s my shit, then yes. When I find my husband is dicking around, lying to me, yeah, that’s my test. How will I respond? That’s what defines who I am. But this isn’t happening to me. It’s happening to Lucas. And I feel it, but it’s not about me. It’s not my test. Maybe it’s for him, so one day I can tell him what he overcame, how strong he is. Maybe it’s not a test… just the way life works. There’s not always an answer for our whys.
I’m scrutinizing everything just the same. Lucas was released from the hospital (again) yesterday morning. He was with us all day, at home. He wasn’t smiling or giggling, really. But give the kid a break; he’s not a circus act. He doesn’t seem happy. He has small moments where he’ll smile, especially when I play with a cookie monster puppet, but overall he’s crying. Which is better than sleepy and out of it. He’s not in immediate danger right now. He’s tracking and crying and awake. He’s just pissed off, like his mama.
I held him some earlier today. He calmed down, and continued to jerk. It’s the kind of jerk I get when I’m falling asleep. That involuntary kind of out of nowhere jerk. He does it when he’s awake. The doctors have said it’s normal, that it can happen as a result of all the changes in his brain. He’s got a change in cabin pressure, I think to myself. Even though the pressure has gone down, not up, his brain is reacting. AND IT SCARES THE SHIT OUT OF ME. There. I said it. He’s jerking and twitching, not his face, just his arms and legs. They aren’t rigid seizures. He’s still tracking. He can look up. The soft spot on his head is still soft, or indented. But damn it’s small… and Phil and I have a hard time finding it. He doesn’t seem to be in immediate danger.
And that’s good. But it also leaves us in a state of panic, watching and waiting without answers. Scared when he does fall asleep. Is it because he’s cried himself to sleep, exhausted himself, or is it because the pressure in his head is making him tired? I know in life there’s not always an answer to our why. I want to be told he’ll be fine, that the twitching is totally normal and will go away. I want to see him smile more. I want him to be happy again. Tomorrow, thank God, we have a doctor appointment with his neurosurgeon, where we’ll go over our list of questions, a bunch of which he won’t be able to answer with anything more than, "time will tell." So we’re videotaping the suspect movements, because without a doubt, kids try to make liars out of you when you’re actually in front of the doctor. "I swear, he was twitching all day, but now that we’re here…" Pants on fire parents. So we’re bringing proof. And I just nearly finished off an entire Entenmann’s New York Style crumb cake in about two sittings. Walk away from the cake. Put the spoon down. Yes, cake with a spoon. Issues.