Some days are hard for Lily, and thus hard for me

Let’s face it – if you were blind, your best days would have some challenges in a less-than-understanding world. Ditto if you were epileptic. Well, Lily is both, and has speech problems, and developmental delays on top of it.

And when she throws a tantrum at night on the phone and disrupts everything? I feel like it throws us all off, especially now, since she’s so damned good at doing stuff that can, well, ruin everything. On nights like tonight it’s really hard for me to know just how much of her bad behavior is willful, and how much is understandable, legitimate, unavoidable response to physical or mental stress.

Look, I honestly believe that I want her to have permission to have bad days and bad moods. I do. You do. It’s not fair that she can’t stomp off to her room and sulk while blasting hard rock or something, because she doesn’t know where her CDs are or how to load them properly. I have not the first clue as to how she might need or want to deal with the seizure activity that seems to be getting worse – she can’t even tell me that, because she lacks the vocabulary and the ability to make her mouth form the right shapes to speak it even if she knew what to say.

This is the real stress that I wish people would understand about my life as a sibling. I hate being left out of medical and legal decisions. It sucks to have to psychoanalyze myself to figure out whether my motives are healthy. But the everyday not knowingness, the frustrated powerlessness I feel…that’s the stuff that fucking wears me out about Lily. And it makes me incredibly mad about her and sometimes at her that she does this to my parents. If I’m tired and fed up, how must they feel? (Which also upsets me, for several reasons. Sometimes I resent her for using them up so fast, when they’re both talented at their jobs and could really make the world happier and better. Or, you know, being part of my life. I’m upset because sometimes I’d like to write an entry like this and have it be just about me, with no concern about anyone else for five minutes – and oh, yes, the guilt hit before I finished typing that. I’m upset because it scares me, the thought of them getting old and changing, because I still feel like I need them. Do you understand why some of us are in therapy, world? Sometimes for extended periods of time? Do you understand better why I might want to see someone like me represented out there in the media, to take the edge off of the lonely feeling that mine is the only family that deals with this?)

It seriously doesn’t help that I’m in pain tonight, too, with a headache of unknown origin and continued ache in my jaw, as I mentioned in my earlier post today. And the hormones. Oh, the hormones! What to you want to bet that Lily’s got hormones making her life hell, too? So when she screams incoherently, and bangs her glass on the table…when Mom tells her not to pour the contents of her glass into her plate, or when she agrees to use an appropriate tone of voice only to lapse mere seconds later…yeah, it’s hard. Sometimes it feels too hard. When it does, I try to vent the emotion (by blogging or talking to friends or swimming or listening to loud music or crying or whatever) and sleep and get on with it…and hope the next day is better.

Sometimes, though, it’s hard to vent and hard to sleep it off. The next bad day is too likely to be the next day, and I still won’t be able to fix it or help.


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