Wednesday, October 28, 2009

31 for 21, Day 28: down syndrome awareness

a friend of mine who i met on facebook posted on her status something that really made me think about down syndrome awareness. she was referring to the article, Three babies aborted every day due to Down syndrome, that was published in the telegraph yesterday.

while i was reading the article i felt sad that so many people are afraid of having a child with down syndrome. so much so that they would terminate their pregnancy. honestly i don't want to judge anyone who makes that decision but i think part of the issue here is awareness. when i was pregnant with maya no one told me what it would be like to have a child with down syndrome. i had various ultrasounds and in the end it was so vague and inconclusive. they told me i had a 1 in 267 chance and that maya had "sandal toes", that was all. since we didn't want to have the amniocentesis they didn't seem to discuss the possibility with us further. we decided on our own that it didn't matter if our daughter had DS because we weren't going to abort. that was our personal choice. it wasn't until i saw her for the first time that i knew, without a doubt, that she had down

i've had a couple friends of mine who are pregnant ask me questions about what they told me at the ultrasounds. it seems to me that the doctors aren't really talking about the possibilities and what it means. i just don't understand why this is so.

i wish that someone had spoken to us about down syndrome and prepared us for our journey. perhaps it wouldn't have been so sad when she arrived, perhaps i wouldn't have had to grieve about not having a "perfect" baby on her birth day and perhaps everyone would have accepted her with happiness instead of worry.

everyday i am so grateful for our daughter. maya is a pure gift. the fact that she has down syndrome only enriches my life. i can't even imagine who she would be without her extra chromosome. i'm not saying that there aren't hard times. of course any time you have a child there are worries and challenges. personally i feel that part of the difficulties of having a child with DS is due to our society's lack of acceptance. under the surface there is taboo still associated with down syndrome. i see so many examples of people with down syndrome doing amazing things, musicians, artist, public speakers, etc. people with down syndrome give back to the community in just the same way as people without DS. if they are given the opportunity, they shine.

i wish i could reach people who are wondering what down syndrome is about and tell them, not to be sad for me. don't be sad for maya. our life is not bad at all. in fact it's quite the opposite, it is very wonderful. there are things that i have learned only because of maya and i would never change that.

i truly believe that the more we accept people with disabilities, the more we realize that there are more similarities than there are differences.

(check out these more alike campaign videos from the national down syndrome congress. i just love them!)


Michelle said...

Great post, Jo Ann!

The Floaters Team said...

This is beautiful, you are wonderful - all 3 of you.

GSDFosterMom said...

Wonderful and touching post. I somehow remember every detail of the afternoon/evening Maya was born ....even though I was so far away physically, I had never felt closer. Prabhu and I ended the evening toasting to Maya's arrival with a wonderful and special glass of wine.

evrfwd said...

thanks all! i appreciate your constant support. oxox