the grinch

one of the things that's hardest about having a kid with nvld is that it's kind of the opposite of "Groundhog Day" (the movie). everyday when i wake up- i have no idea how zoe will be. there are days when the planets have aligned and life is as sunny as can be and i wonder if maybe she doesn't have a learning disorder at all, maybe i've been all wrong. but then the next day even, all that goes out the window and she'll be completely off. like someone smeared peanut butter all over her brain, and it's just not working and she's ultimately frustrated, and honestly, who can blame her?

last week was a perfect example- monday, was a pretty good day, especially because mondays are classically our hardest. tuesday was rainy and kind of awful- math wasn't coming, she couldn't remember the names of the state capitals, she melted down over not being able to spell "piece" (i can barely spell it- the i-e thing!) and reading was a challenge. wednesday was a dream! her handwriting was excellent, she was focused and determined- she did piano and typing independently- she thought it was funny when she forgot how to spell a word- and she shone at math! and thursday was kind of like monday. if we could figure out what it is that makes a wednesday, we'd be set. we'd both be set. because try as i may to reign it in, i'm like an amusement park mirror- i take where ever she is and massively distort it. i over react. i get frustrated with her frustration. i even get frustrated at her inability. "what do you mean you can't can tie that? you did it yesterday?"

oh- right, that is the problem.
oh right and it's not your fault.
oh yeah- and you feel really bad about it too.
oh right, this is actually, YOUR LIFE.


people have said that having nvld is like trying to write backwards with your non-dominant hand while on muscle relaxants and living in a foreign country. imaging your sensory system is off, so you receive signals of pain when you're having your hair brushed, the vacuum sounds like being on the runway of an airport with out headphones, and when you close your eyes you feel off balance. now imaging that you can't block out the ticking of the clock while someone is talking to you. so now you don't really know what the person is saying, because not just is there a clock, but also a dog barking outside, and three other people taking at the table next to you. now its you're "turn" in the conversation, but you've missed part of what they said because of the distractions, and the persons tone of voice is confusing to you, you aren't sure if they're joking or mad at you, and their facial expression is also unclear. so you do what's easiest- when it's your "turn", you just talk. you talk about what you know- american girl dolls or harry potter or whatever comes to mind even if you just said it. this of course confuses the other person, so their tone and expression are even more difficult to read. you're not sure what to do, but you have a good intuition that this isn't going so well, so you internalize that and it begins to chip away at your self esteem. and then after years of this, you become really stressed out and anxious when you're in social situations- or places where you know you'll be overwhelmed. and it's hard to forgive yourself and accept that this is just who you are. it's hard to understand why God make you this way. it's hard to love yourself. and it's unfair, really unfair.

sometimes in these moments when i think I can't take it any more- i see how absolutely unbelievable she is. and i'm so humbled. i think i know her so well, and i do. but i have no idea of what it's actually like to be her. she has to deal with the inconsistency of this every minute of everyday. she is the one who wakes up and doesn't know if today she'll remember the motor sequencing to tie her shoe. if words will come out easily or if she'll struggle with saying what she means. if math will make sense or not.
when i can get it though my thick head to remember this,
my small heart grows three sizes that day and i ride triumphantly on my sleigh, down to whoville where i myself, can carve the roastbeast.