Two years ago, before we knew that Babygirl had no kidney function, was the last time she could have gone trick-or-treating without worrying about following a specific diet. She was stick thin, atheletic, and ate like crazy. I remember, though, that she wasn't feeling well that day, although I can't recall why. We went around the block with my nephew, who was dressed in his finest chain mail, sword in hand (it's some serious chain mail - he's over six feet tall), collected a little candy and came home early.
Last year, (http://kidneedsakidney.blogspot.com/2011/10/week-twenty-eighthappy-halloween.html ) she felt well but wasn't allowed to have much candy.
This year, she has a headache.
It's always been the rule at our house that if you are too sick to attend school, then you are too sick to participate in whatever fun event is on for that evening. If you are sick on Friday, you are too sick to participate in fun events for the entire weekend. None of my kids faked sick more than a couple of days that I know of. And all of my kids had very good attendance records, despite the fact that two other of them besides Babygirl had some pretty significant chronic illnesses.
But what about tonight? She's not sick sick, she's headache sick. The pain will probably be gone by 1 o'clock this afternoon. If we're lucky, the school will send her tutor out after school. So what do I do about the school attendance rule? If the tutor comes, I guess I COULD count that as attending school, right?
This falls into the category of trying not to raise a brat. I don't want her to think that rules don't apply to her just because she's sick a lot, but isn't it essentially true? She exempt from deadlines at school, she's exempt from making up gym classes, everybody bends over backwards for her to help her succeed. And that's as it should be. She's not excused from household chores, and in fact has very little trouble keeping up with her chores because she's home all the time.
But what about this sort of thing? How do I balance this stuff out? Is this a discipline issue? A health issue? A life-is-short-let-her-do-whatevertheheck-she-can issue?
I like to think of myself as a good mom (with, perhaps, the spectacular exception of not noticing that Babygirl was actually ILL and not merely chilly!). But some of these choices just stink. Say yes to the candy bar? Buy the newest gadget? Allow more video games? Let her get away with watching Glee reruns instead of reading? (Sometimes, no, no, yes.)
This is perhaps the second hardest part of parenting a chronically ill child - the first being my helplessness in the face of her suffering. If she were dying, well, heck, give her whatever she wants whenever she wants it. But if I expect her to become a productive adult member of society, I am doing her no favors by letting her think that she can do what she wants, when she wants.
I should have asked her this morning if she really felt bad enough to risk missing trick-or-treating. But it would have been a stupid question. She was wearing sunglasses, gagging on her medications, and refusing to eat. It's reached a point that even with today's complaint of neck pain and stiffness that I know there's no real point in calling anyone - no fever, normal pulse and blood pressure, normal CT scan, and all that - with the addition of a new medication today, doing all we can do. And we know what we need to know.
Except how to stop the headache from coming back.
Screw this. She's trick-or-treating. And if she doesn't feel up to it, she gets first pick of whatever candy we were going to give out.