You figure out what the extra 'F' means in the title.
Been a rough week.
I'm baffled by Bennett's current behavior pattern. When he is at school, he is engaged in his activities and not unhappy, making some progress, albeit very small steps...you know, 'Inchstones'. He doesn't get upset very often and all the reports we are getting from there indicate he is doing well emotionally during the day.
But at night, when he is home, he goes through periods of extreme duress. Since he cannot communicate with us I do not know why, and while we often try to postulate the reasons, we can never be sure.
If it wasn't such an awful sound/experience of his walking around and screeching, it might almost be funny when Jennifer and I start trying to figure it out.
Did he poop today?
I don't know. It isn't written on the sheet.
He might be constipated.
Maytbe. Did he get his afternoon medicine?
I don't know. Lemme see if his back tooth is all the way in.
It CAN'T be teething, I mean...all of them are in now, aren't they?
How long was his nap today? Maybe he's just tired.
Maybe he just wants to be held.
How much did he have for dinner?
Etc., etc., etc.
And all of this while trying to distract him with snuggling, food, engaging toys and the like, and none of them work for long. They'll calm him for a few minutes, but then he will start screeching and wriggling to get away, or spit the food out, or throw it, or throw a toy. He'll then lay on the floor, and bang his head and arms a few times.
And if you try to lay him in the bed and snuggle with him in the bed because you think he might be tired? Any neighbor hearing the sounds that come out of this boy would think we were murdering him. It's that intense. He will scream, stiffen and do anything...ANYTHING, to get off the bed and away from the person who tried to take him there.
So last night, his grandmother took him overnight. She offered because she thought we needed a break. I agreed to it because I wanted to have him go there as more of an experiment. And lo and behold...he was fine. He had one screech/tantrum during his bath, but other than that not a thing.
NOW what do we think? Not sure. Could it be us? How weird would that be? We'll see what happens tonight, after school. He might be totally cool, he might not, we simply don't know. It is causing us major stress though, I can tell you that.
We do the whole ball of wax the first week or so of August at Cleveland Clinic. Neuro-Psych, Neuro-Oncology, MRI, EEG, Epileptologist, 1-year Surgical Follow-up, and on and on. We'll certainly be seeking any answers we can get, but if past experience is any indicator...there ARE NO ANSWERS. No definitive ones anyway.
There never are.
I don't believe the behavior is seizure related, I don't believe the behavior is because of something going on electrically in his head. I believe that the answer is simple...he can't talk and he wants to. He wants something and he can't tell us. Sad thing is he understands a LOT of words. You can see by his reactions to words.
Earlier this week I overheard Jen saying something about the possibility of him never really being able to talk, about his development possibly never really progressing beyond a certain young age point, about Bennett never really being able to have the kind of life we always hoped he'd be able to have if we stopped the seizures and the tumor never returned, both of which happened.
A Pyrrhic victory, to say the least. And yes...I do understand things could be worse.
So that's that.
On Carter's birthday, I had to leave the festivities and take Bennett home early because he was freakin' out. This week I had meant to post some pics of the party and even (hopefully) finish my essay on Why Things Suck, but haven't had the gumption yet, or much time. Or the words, frankly.
Last night, rather than catch up on stuff like that, we took advantage of the Non-Bennett environment to spend the evening just focusing on Carter. Even though there are some things in the movie that are WAY too age-inappropriate for a 6 year old, we watched Ace Ventura: When Nature Calls. I needed a good laugh and for some reason I always laugh at Jim Carrey in the early days. Always.
He enjoyed it too, since the Ace character acts so silly. We had fun. It was pretty quiet otherwise. But I do have to admit...having Bennett not be there was weird, even though when he is here there is stress if he goes into freak mode.
I missed him.
I felt EXTREMELY guilty for not having him here. I felt...I dunno, like I was too weak and too unwound as a Dad and should be there for him no matter what the circumstances and I need to suck it up and plow forward.
Beating myself up. Oh, how I excel at that.
More of the other stuff later.