self advocacy

here's another site that i'm sure i've told most of my friends about. it's the national down syndrome congress site. my favorite part of this site is the self advocacy section. i love the idea that maya is a self advocate. because she is interacting with so many people she is making a big difference.

a while ago many people with down syndrome were stuffed away in institutions. now they are immersed in the society. it just makes me so happy when i see people out and about. of course now i probably notice it more and more because of maya.

the other day i went to the bagel shop to grab us some breakfast. it's well known that this place, on the weekends, is the stopping point for cyclist. on any given sunday you can see groups of cyclist eating their bagels and drinking some coffee, before they get back on their cycles to continue. i've seen many there with their spandex outfits and bandanna hats. one sunday a couple of weekends ago, i was walking out the door when i saw a young man with down syndrome with a group of cyclists. he was dressed as everyone else was, in his spandex outfit, sunglasses on his head. he looked like he was just one of the guys. i can't tell you how this made me so happy. it really touched my heart. a friend of mine went there a few weeks later and saw the same fellow. he said he saw him getting on a tandem bike with another man. they rode away from the bagel place just as my friend was exiting. now my friend also notices these events and shares the same excitement and joy.

the below page has little snippets of the self advocate council. the people listed here are super inspiring.

self advocate council

Down Syndrome Myths & Truths

we found this website as we were looking for more information about down syndrome. all of a sudden it became important to find out as much as we could about it. even our friends were looking up info on the web. it felt like people were supporting us by learning more about down syndrome themselves.

down syndrome myths and truths

what makes people sad about having a baby with down syndrome? that's the question that i thought about when i had her. why was i crying? was i really sad or just shocked? some people were sad for us and said sorry, but others said it was not the end of the world. the people that congratulated me were the ones that helped me accept maya. i wasn't a victim, i was a new mother after all.

i suppose our society lends itself to thinking that people with down syndrome are flawed in some way. i mean there has to be a reason why 90% of the women that find out they are having a baby with down syndrome terminate. did i feel like i was getting a bum deal by having her? and if so, how was it that i came to that conclusion? why do we put a negative label on a person with "special needs"? i mean maybe she will show us a different way of looking at what "success" is. it seems that is what i am learning the most about this experience. it's hard to explain but part of me thinks that i am more in the moment because of her. she shows me that it's the little things that make a life worth wild. like the first time i saw her sucking her thumb. i was so happy that she found her thumb and started to suck it that i grabbed my phone and took a picture of it. it's a really dark photo because it was in the night, but still it is beautiful to me.

more than anything i think that maya is an amazing baby. she is mostly no different than other babies...yes, she is on a slower learning curve but i see she already has a sweet personality. she has brought so many people together just by existing. it's only been 16weeks but so far i think she has shown me how wonderful life can be. i never knew that i had an empty spot missing in my heart until i had her. now she has filled it ten times over. i would never change who she is, extra chromosome and all.

true to her name

below are a few definitions of maya's name. when i was in college i knew a girl who's name was maya. i thought then and there that if i ever had daughter i would name her maya. as the years passed and i started to study buddhism, i discovered that the word maya has a very complex meaning.

true to her name, maya's name shed so much light on what this life is about. because she was diagnosed with down syndrome she created a new world for me, she had me questioning reality. my ideals of what my daughter would be like took a new shape and meaning. it's quite ironic because i had a perfect picture in my head how maya would be, and i had to let go of that illusion right away to accept who she is. it felt like a great teaching.

meanings of maya:
The girl's name Maya \ma-ya\ is pronounced MYE-ah. It is of Spanish, Hindi and Russian origin. In Spanish, short form of Amalia. In Hindi, from Sanskrit, meaning "dream, illusion". In Russian, a form of Mary. A star constellation.

maya (mä'yä) , in Hinduism, term used in the Veda to mean magic or supernatural power. In Mahayana Buddhism it acquires the meaning of illusion or unreality. The term is pivotal in the Vedanta system of Shankara, where it signifies the world as a cosmic illusion and also the power that creates the world.

welcome to holland

this is an article that i was given by one of the organizations here. it does a great job of describing what it's like to find out your child has down syndrome.

emily has inspired and helped many people with this article...including myself.

Welcome to Holland
By Emily Perl Kingsley

inspiring story

someone posted a link to this article at the down syndrome society and i really thought it was inspiring.

from the chicago tribune, "Despite Down syndrome, son jumps at any chance to follow his dad"

a new dream called maya

i've asked myself why blog? after having this blog account for over a year i've finally decided it's time i start using it. before i was on the fence about it because i've often thought that people that blog are basically exposing things about themselves that perhaps no one really wants to see/hear. it almost seemed like a waste of time to me. it wasn't until maya chose to come into my world that i started to investigate blogs again.

i started reading a book named GIFTS: Mothers Reflect on How Children with Down Syndrome Enrich Their Lives it was here were i started seeing blogs by mothers that have children with down syndrome. as i started to read some of these blogs i felt as if i was part of a community. i have been enjoying reading what others lives are like with their children. it gives me hope and encouragement. so i have decided to create this blog for my daughter. i see it as a form of advocacy.

before maya came to me, i didn't have much of a clue about people with down syndrome. i had worked in a group home for adults with disabilities when i was in college for a short while, and have always had a special feeling when i saw people with down syndrome but that's about it. while i was pregnant i found myself looking around for people with down syndrome. where are they? why aren't they interacting with the rest of society? now that maya has come into our world i can see that she has opened my eyes in so many ways. it seems that she has touched so many people just by existing. she has brought awareness into peoples lives that didn't even know what down syndrome was. she is an advocate. i feel so blessed to be a part of her world...i hope you also enjoy her.

this fleeting moment

everyone wants to be loved
yet we fear sharing our hearts.
once we get hurt, it's automatic,
a barrier appears to shield us
from falling once again.

what i don't understand is why the ones
you love aren't the ones you end up with?

the ones you feel are right for you
just aren't the ones that will stay.

this is perplexing.
perhaps a riddle inside this universe
that many of us won't be able to solve.

are we looking in the wrong place?
outside of ourselves, instead of in?
at the end i would think we might
realize that all of this is an illusion.
perhaps even the "i", we thought was "me".

what we think we want, only is a fantasy
and what we have now, at this moment,
as fleeting as it is, is the real thing...
the only thing that matters in time.