november 16, 2007

lili is happy video:

http://www.youtube.com/watch?v=OYXI4d5hHG8

IMAGES

person first language
tons of people refer to lili as a "down's baby", it's especially odd to me when they capitalize it (Down's Baby).

i've read about person-first language and i have been correcting people to say "baby with down syndrome"
but i have really been contemplating this person first language thing in regards to my daughter since something about it did not feel exactly right...

to say she is a child WITH down syndrome implies that she is this person with down syndrome sort of added on or something....which makes it sound like if we just "took it off" , removed it, cured it, then she would just be a CHILD..not a child WITH. and be herself finally. it implies down syndrome can be fixed.
(i guess there ARE many many people who think it can be cured and are looking for a cure. i'm not sure if this can be done or even SHOULD be done. if i could "cure" her of T21...would i? would i WANT to? who would she be then?)

but she wouldn't be herself without it. it's actually a part of her body in every single chromosome.

it's not like an extra finger or something. or a disease. or something to be fixed.

but at the same time "down's baby" does not sit at all right with me either. because it sounds like the downs OWNS her.

and "a down" sounds pretty horrid. and "a down" also makes it sound like that is ALL she is.
and i guess that is also what i don't like about "down's baby" or "down baby"...she is SO much more than just a trisomy of the 21st chromosome. it's not her ENTIRE being.
and so i am in a quandry about it. and since i am calling it T21 now...dunno.

i don't like either way.

i've been reading that many autistic people like to be called autistics and not person with autism for this very reason.
because it is who they are. they are not someone WITH it, they ARE it. it is part of their personality.

i don't know...maybe none of this is really even that important. i don't think it's every going to affect how she sees herself.
BUT i do think it can affect how others see her and view others like her...and therefore how she and others are treated.

language is powerful, even when it is subtle.

i think about other adjectives used to describe people who are also used as nouns, such as "the redhead".
are redheads insulted when called this in this way? or are they not simply because they are secure in themselves to know that is not ALL there is about them?
this person first language might be stemming from insecurity? i don't know.
or what about when people say someone is short..they do not say a person is WITH short, they say a person IS short.
do i care when someone says i AM short? no..because i AM short. and i know that i am more than just my shortness.

...pondering....

someone wrote in a lj community:

"When people focus on the exact terms used to label a child, they're focusing on the label not the child. It's easier to get in a row over whether the right terms are used, than to concentrate on the child and his/her needs and see that they're met."

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more on people first language:

http://www.disabilityisnatural.com/peoplefirstlanguage.htm



9:23pm

a few hours ago lili was crying in her swing. i came to get her and pick her up, swaddling her in her favourite soft blanket and wiping away her tears (i had been in the kitchen putting away the soup).
i gave her milk and she did not want it. i gave her the pacifier and she did not want it.
so i just said "i love youuuuuuu" and she smiled the hugest smile looking at me straight in the eyes and she said "aaaa aaa ooooooo!" back at me several times smiling and laughing as she did.
what she wanted was ME.
for the first time i really felt that she was crying not because she wanted me to give her something but just because she actually missed me :)
then she fell asleep in my arms.
i love this :)

3:32 pm

i bought some kombucha.
http://en.wikipedia.org/wiki/Kombucha

i didn't know it was a health fad in the 90's.
i found out about it when i was reading "wild fermentation"

supposedly is is massively good for you.
containing all these living micro organisms and such.

it tastes pretty awful.
like a sparkling apple cider vinegar.

but i think i may aquire a taste for it and , i don't know if it's psychosomatic, but it does "feel" very "alive" and i feel kind of invigorated after i drink it.

it's a nice pleasant fallish day.
i'd love to go out for a brisk walk but lili is asleep in her swing and i am tired anyway.

i'm trying to make a lamb and rice soup.
i cooked the meat and bones all throughuot the night but forgot to add salt.
bah.

so now i added salt and herbs and root veggies and i'll let that simmer for awhile.
then take everything out and sort through it and cut it.
i'm a weird soup maker.
i cook the veggies whole and then take them out and cut them.
mostly because then they are soft to cut because all my knives are sooo dull.
i need a good knife so much.

coojie bought me a sharp knife a few years ago and it worked great until one day it snapped in 1/2.
it was too brittle of a knife.
it wasn't forged well or something.

this is my day. lili and soup.
googling things to learn about them inbetween feedings and throwing things in the soup pot.

i am learning about fat.
what is suet, tallow, shortening, lard
how to render suet into tallow to make soap.

i did not know that soapmaking was such a long and involved process (if you want to do it all from scratch)

i want to make EVERYTHING from scratch.

soap, candles, clothing, fabric, dishes, furniture (someday i want a pottery wheel and kiln)

i want to make my own house from stone.

this is my dream.

lili can play in the garden.

i want her to grow up with fresh things that are good for her.

i see her little bare feet in the dirt, pulling up a carrot, snacking on some peas straight from the pod.

i knit her a sweater from yarn i spin and dye myself.

we have chickens for eggs and a cow for milk.

i make soup in the kitchen and m kisses me on the back of my neck while i make it.

we run to the bedroom to make another baby.

i'm idealistic and romantic but it could happen.

somehow.

i'll keep dreaming it until it does.

i do have the "i make soup in the kicthen and m kisses me on the back of the neck and we run to the bedroom to make another baby" part down :)

so i'm getting there.

lili is asleep in her swing. when she wakes up i will feed her my milk and kiss her feet.

p.s. now i am researching how to make a traditional christmas pudding.
http://www.npr.org/templates/story/story.php?storyId=5038009

p.p.s.
does anyone know if there is anything useful that can be done with soup bones after they have been cooked and taken out fo the soup? can they be ground up for compost or something?

man, i wish i had a yard so i could have a compost heap.
i would have the BEST dirt by now if i had a compost.

12:04 am
Current Mood : beyond mystified

i am so aggravated.
my broiler pan has disappeared.
how could a HUGE broiler pan that has ALWAYS gone under the stove (because that is the only place it fits) just VANISH?
it's just.....GONE.
WTF?

i've looked everywhere. and there is no reason for it to be in another room.
and my apartment is not that big.
seriously...WTF?

this is one of those seemingly small things that can drive a person crazy!

it's so illogical.
and i NEED it NOW.
i have no other pan to take it's place.

i wonder if i am going to get my period soon because i really feel like i have PMS for the 1st time since before i was pregnant.
i'd really like to get my period since that would probably mean i am ovulating.
and i want to ovulate dammit.

Nov. 15th, 2007

6:27 pm

i can't stop contemplating that whole nasty thread about me and my daughter.
i've gone back to read it because i am curious as to how "the world" sees T21.
now, i am not sure if that place is an accurate representation or what...but still.
i ponder how people can think like that.
i think it must be, in part, because they are thinking that a person with T21 suffers.
people with T21 do not suffer. i think they are projecting their own suffering upon them.
people who are different make people uncomfortable. uncomfortable = suffering. and so if a person feels uncomfortable whnen seeing a person with T21...they assume it is the person with T21 who is suffering not them.
it is confusion and ignorance.

but then again, it is not just about wanting to alleviate the person with T21's perceived suffering, but these people want to see me suffer...for reasons i have never been able to understand, and i have given up trying to understand it.
but basically it is because i show myself naked sometimes, this makes people angry and so they want to see me suffer for that.
and so they say mean things about my child to try and inflict suffering onto me.

i really don't know....like i said, i've given up trying to understand it. but i DO know it revolves around me showing my body naked in the past and being a woman who expresses herself freely how i want to.
that much i do know.

anyway...
i don't care about that part anymore. i gave up caring and trying to understand that aspect long ago and have moved on from it.

i'm leading up to my point which is....
i do not care what these people say about me...but i do care what they say about lili.
not because it hurts ME but because , in the future, if lili should ever want to have access to a computer she may come across these things said about her and it will hurt her.
she may not have the capacity for shrugging it off as i do.
not because she has T21 but because of who she is...a sensitive soul.

my question is this.
do i disappear from the internet entirely in hopes to spare her SOME of this shit in life?
because MAYBE 10 or 15 years down the road some of this stuff may still be up and she might find it and be hurt by it?

surely i realize i cannot spare her from all of life's cruelties, but i can do whatever i can to spare her SOME of it.

or do i teach her, through my actions of NOT retreating from the internet, that it is good to do what you want in life and be who you are and NOT retreat in any way. i mean, this is how *I* have lived my life. i am not a retreater. i do what i want and i don't care what others may think of it.
it's MY life.

but now it is her life , too.

i'd like to just be able to share my life with my daughter on the internet (within safe reason) just as every other proud parent does.
posting about their children's accomplishments and photos.

but because of who i am and what i have done in my life so far, i am more of a target of hate than the average person.

i'm am 50/50 on the fence with this right now.

1. just live my life as i have always lived it and share what i want to share and what people think be damned or

2. go buy a farm somewhere and retreat from the internet and just go raise my family in peace.

i'd like to be able to educate people that a person with T21 is just a person like anyone else and that it is not a disease or something that is broken.
and i'd like to just be able to talk about my daughter like evey other parent gets to do.

but i don't want to bring future negativity to my daughter that i could have prevented.
but i also don't want her to grow up in a bubble and be an overly protectve parent.

this is somethnig i need to decide on to be at peace with whatever decision i go with.


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Baby Registry:

http://www.amazon.com/gp/registry/baby/3BKBUJCBUDKXC