Thursday, March 15, 2012

The reason why I blog about Down Syndrome

There are of course the obvious reasons that I write this blog -
> I'm completely and utterly proud of Cate & Lucy, so I want to show off
> My parents travel a lot and Ric's family doesn't live close by so it gives me a way to include them in our kids lives
>  I like to write and I'm inspired by the blogger moms who document their lives with DS

But the # 1 reason is the hope that just one woman who has received a prenatal diagnosis of Down Syndrome reads this blog, sees how awesome Cate is and it give her hope for her future or even changes her decision on keeping her baby.  Because I won't lie - getting a diagnosis that your baby had Down Syndrome hard, feeling like your world has ended hard.  The difference between mothers who have experienced this is how long that feeling lasts.  I was one of the lucky ones.  We didn't have a doctor tell us that Cate wouldn't have a real life - but I personally know people as well as having read so many stories of doctors telling parents exactly that, things like your child won't walk, talk, be potty trained.   Since my hospital experience was more about Cate's heart condition and less about her having DS, I moved past it more quickly than most, but not without a grieving process.  I've said it many times before - I thank god all the time that I didn't have to make a decision based on a prenatal test.  I'd like to think I would have kept Cate and been confident in my decision before she was born but I can't really know that.  I had no insight in the world of DS, no clue as to the awesome experience I was about to have, no idea that Cate would be as amazing as she is before I held her in my arms. 
If you aren't a big reader in the DS world you probably will be shocked to learn that internationally it is estimated that at least 90% of women who receive a confirmed prenatal DS diagnosis will terminate the pregnancy.  Of course that number only takes into account the women who elect for an amino or other test that carry a 1% chance of miscarriage, but still it is a staggering.  Now there are new tests that some medical scientist are saying could eliminate DS almost completely.  These new tests, like brand name Materni21, are blood tests that can be given early in pregnancy with high effectiveness and no risk of miscarriage.  The experts' anticipation is as the percentage of women who take the tests go up the number of pregnancies carried to term with Trisomy 21 will decrease.  The thought that many more people giving up on a baby who could be like Cate breaks my heart.  I can understand the fear - "can I handle a special needs child" or "will my child's life be one of pain & heartache".    But the thing is that it is impossible to know what you can handle to help someone you love, until you do it.  That's the thing I came to learn - it is OK to be scared and to worry but I am stronger than I thought and the challenge make life sweeter.  I was one of the lucky ones to be given time and incentive to learn these lessons so I hope someday my experiences will make the transition from fear to hope faster for someone like me.  The only thing I can do is continue to show off my amazing girl in public and on this blog because the world can only be a better place when we learn the lessons this little girl has taught me - compassion, patience, pride, awareness, and unstoppable love.
Cate modeling her new school dress today so I could send a picture to daddy.

No comments:

Post a Comment