october 4th , 2008

31 for 21

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post for 31 for 21:

first i will start with saying positive things because i am in a good mood this morning :)
fall is becoming my favourite season now and i'm going to go out with lili and get a pumpkin and some squash and other veggies for a fall soup!
and i'm listening to seals and crofts which reminds me of my childhood.
my dad moved inot my apartment building a few days ago and he lives down the hall now!
now lili can get to know him and i can see him all the time.
super super wonderful!

lili is in her red and white striped jammies and rainbow leggings and she looks like a little elf.
she is humming to a piece of yellow string.
telling it all her worldly secrets.

ok for the more negative thing because i have been wanting to get this off my chest anyway:

a strange phenomena i am discovering about having a child with down syndrome is that there are a LOT of people
who don't mind you being happy as long as you are not TOO happy about it.
it's like there is a compulsive NEED to bring my happiness down a notch to what they deem is "reality"

now i do not think it is a normal and acceptable custom to go up to new mothers of healthy children and make sure that
they do not get too happy about it and make sure that they KNOW that in the future their children will get sick with
A) B) C) D) E) and F) and not only this but it will cost X) Y) and Z) which is surely going to bring heartache and struggle.
and that, not only this, but now because i am dutifully informed of these impending disasters i must go tell every other new mother on the planet
my newfound inevitable doom and gloom.

no, we do not do this to new mothers of typical healthy children.
we allow new mothers and mothers , in general, to bask in the glow of their happy healthy children
and we "thank god" for that and taolk about our blessings and how "ain't life grand"
and "aren't children wonderful blessings?"

but all this seems to go out the window if you have a child with T21.
if you have a healthy child with T21 then you better BE CAREFUL!
YOU MAY BE HAPPY NOW BUT YOU WON'T BE IN THE FUTURE where
INEVITABLY my child will be facing a depressing future of struggle and heartache!
and i will , too!
and didn't i know THIS IS WHY so many women ABORT children like daughter.
because, didn't i know, it takes a SPECIAL mother with a soul of STEEL to withstand
it all!
i am warned to not spread TOO much happiness because
this is not REALISTIC and i may cause some women to think that havng a child with T21
is actually OK!
when in reality, MOST women will NOT be able to possibly BEAR having a child such as my daughter!
my situation is unique and special!
don't give anyone hope that it could EVER be the same for them!

yes, this is the kind of energy i am given back by quite a few people when i try to spread a little light on the subject of the positiveness of
T21.
this is how some new mothers of healthy children with DS are treated.

it is COMPULSIVE NEED of them. in fact a DUTY to inform!

WHY IS THIS?
why is this acceptable to do?

and why is it that when i said i was going to make a website that told the positive stories of DS
i was met with so many people ORDERING me that i MUST also tell the struggle that some parents face, as well?

do all websites that talk about joys of typical children also have in in WARNINGS and CAUTIONS about all the things that MAY go wrong
in life , too?
do we make this a prerequisite for all websites about typical children?

no we don't!
we don't even THINK a about it!
we think "how nice that there is a website that is happy about children"

the thing is, all the things that can go wrong with a child who has T21 are ALL things that can also go wrong with a typical child.
all children get sick. all children get sicknesses.
many children typical or not may need glasses, braces, hearing aids, various surgeries.
any child can get cancer, get any amount of variiety of illnesses, diseases, or accidents.
anything can happen to AN ONE OF US at ANY TIME!
any child can get autism or polio or have seizures.
really the lost can go on and on and until we are so wrapped up in fear we may as well not have childen at all
or even take a step out of the house.

yes, children with DS are more susceptible to certain things.
SOME will get be more sickly.
but there are also millions of typical children out there who are also more sick than your average child.
it isn't just limited to children with DS!

but do we need to make sure to FOCUS on this?
and certainly MUST we make it a focus of our lives if our child is happy and healthy?
is it my realistic DUTY to make sure i live in fear of the future just because my child happens to have extra chromosomes?
and is it the duty of strangers to WARN me to not get too happy?
and to also tell me that THIS is why children like my daughter are understandably aborted?

also,
think about all of the diseases that certain races of people are more suseptible to.
like heart disease in aferican americans, or alcoholism in native americans.
(i can only think of those 2 at the top of my head right now but i know there are a TON more)
do we say to these people that it would be RESPONSIBLE and GOOD to abort based on that?
do we just say to certain races of people that they better not reproduce their kind because they happen to be more susceptible to certain things?

no we do not.

but why is it ok then for 90% of women to abort their child with DS just because it may be more susceptable to certain things?
we do we look upon that as a GOOD thing. a thing a RESPONSIBLE MOTHER does?
why is this so acceptable?

don't get me wrong, i am pro choice.
reluctantly and sadly, tho.
but i do believe a woman has the right to do whatever she wants to do with her body or anything inside of her body, whether or not
her choice makes me cringe or not.

but why it it looked upon as a GOOD and RESPONSIBLE thing to abort children like my daughter just makes me
sad beyond all possible belief.
that it is so common. that it not even really given much more thought than that.

and why it is that people need to inform me of this when i talk about how happy i am with my daughter.
i don't get it.
i just don't.
this is my post where some people commented in this way to me, in case you would like to see an example of this phenomenon:
http://it.livejournal.com/76572.html

(velvet mouth for one)


and well, now i need to go now and buy my pumpkin and get in a better mood.
i wnat to return to where i was in my happiness a few moments ago.
i will walk out into the sunshine.
and i will make my fall soup.
i will feed lili sweet potatoes and squash.
i will show her the leaves turning colour.
i will show her the sun.

+++


Oct. 2nd, 2008

post #1 for 31 for 21:

this really should be post #2, as this is day 2. yesterday i was befuddled as to what to write and, i admit, today i am, too!
it could be that my pregnancy is making my brain fog over.
or it could be that i am just terrible at having to come up with something.
hmmmm....

what to write about down syndrome?
i think about it every day.
i read about it every day.
why am i so at a loss to write about it yesterday and today?

there are a few articles on down syndrome i am still mulling over.
one made me so angry i don't think i will ever be able to write about it because i just don't have the energy for that much anger.
this article:
http://www.timesonline.co.uk/tol/comment/columnists/minette_marrin/article4837804.ece
it's not about down syndrome specifically but disabilities
and how it is understandable that people could feel shame enough to drown
their children in the bathtub. and we should have compassion for that.
ya...
it's enough to make me want to move off this planet.

in happier news, lili is moving all over the floor now.
being a happy little mover and shaker :)
when she is on the bed she gets up on her knees and rocks back and forth like a puppy just about to take off to everywhere all at once :)
today when i was laying on the bed she climbed all over me and
giddily licked and chewed me all over my face until i was laughing so hard i could barely breathe :)
it is the most amazing feeling ever to feel so much affection from her.
she throws her arms around my neck and grabs fistfuls of hair. ouch!

she is so interested in everything now. the world around her.
she wants to touch and taste everything.
she struggles against sleep because every second of life is a tasty treat of sight, sound, smell
she explores everything with delightful gusto
shoving her face into mounds of pillows and listening to the muffled sounds of her voice
feeling the bedspread and its texture on her skin
feeling her limbs push against the weight of gravity
then she flips back on her back and claps and giggles at her newfound discovery

i can't believe there are so many people on this planet who think people with down syndrome suffer.
or even need to be cured of something.
i feel sad for anyone who could feel shame about it
and try to hide their light

she is my little sparkler