i don't know how to talk about this or if i even want to talk about this so if you come back later and i've deleted this, then you'll know i changed my mind. but sometimes i wonder if there is anyone else whose baby has CP and if they do, if they feel like i have been feeling this week. because it's just been this week that it's actually sinking in that hilina might not be ok. i guess i've always just assumed that we're doing all this therapy and she's made so much improvement physically, that everything would be fine and she would maybe take a little longer to walk and talk, but that she'd catch up. maybe have a little limp, but it honestly never occurred to me that she might not be capable of catching up completely. we've had some evaluations in the last few weeks for speech and special instruction (both of which she qualifies for) and they've been pretty discouraging. it sounds so stupid, but i'm just now realizing that she might never be able to control the muscles in her mouth well enough to speak clearly or that we won't be able to do enough for her to right arm so that she can use it just as well as her left. and with her still being so young there is still so much up in the air. because her brain injury was so severe and primarily affecting her language center, we don't know how much the right side of her brain will compensate for the left stroke area. her brain is actually re-wiring itself on a daily basis and we don't know if when it stops she'll still have epilepsy. we don't even know if the seizure medication she takes is frustrating her ability to concentrate, or if she just isn't interested in what we're trying to teach her.
when you have a child you spend hours daydreaming about them, about what their future might look like. what they might want to do, if they'll marry, if they'll be as horrible a teenager as i was... and i think very naturally i always pictured saida and hilina together. running on the beach chasing each other, covered in sand. sitting at the kitchen table doing their homework (in my head i always have a kitchen big enough to have a table to eat at!). i never once pictured judah passing hilina. i never once thought about how it will affect saida if she always feels like she has to protect hilina. because i never pictured hilina growing up differently than saida and judah. it's like my life has gone a little out of focus this week and i just need to re-imagine it but i can't because we just don't know. maybe i just need to learn how to let tomorrow worry about itself.
on a lighter note, we went into the city a few weeks ago down to my old stomping grounds in battery park. we got to watch the sunset behind the statue of liberty. believe it or not, the view of the water is the same from my old office and i don't miss it one bit.
judah's first swing!
i seem to be saying, 'uh a little help here?!?!'