Thursday, October 20, 2011

Its Here

For all you pregnant or will be pregnant one day women, its out. You can now request to have blood work done as early as 9 weeks that will tell you indefinitely if your growing baby has the extra 21st chromosome. A few weeks back, I wrote why this scares me.

Back in November of 2010, there was an article in Parents Magazine written by a mom of a child with Down syndrome. She didn't find out her babies diagnosis till after birth. And I remember reading her honesty as she poured out how it haunts her knowing that if she knew before hand, she would have terminated. She never imagined how much she would love a child that had special needs. Her exact words, " before we never wanted a child like Johanna, now we couldn't imagine life without her"

That little sentence speaks mountains about the danger of prenatal testing. While there are many positive reasons to test for parents who have no intention to terminate, it doesn't outweigh the overwhelming bad things that will come out of this test, mainly, lost lives.

I had lunch with an acquaintance the other day. Some one I truly admire who happens to be a mamma of a designer gene princess. We got to talking about advocating. A roll you are forced to accept, and one that kinda comes naturally when you have a special needs child. We talked about all the different ways to advocate. Some do it by protesting. Some do it by educating. Some do it by highlighting the good things. Some do it by being open about the hard moments. Some do it for an grand audience, while others keep their advocacy to just close friends and family. There really is no wrong our right way to advocate, other then not doing it at all. We each reach different markets of people. And our advocacy for our kids is what will help give others better information when having to make a "decision". They need to know about the hard stuff, but they also need to see how normal life goes on. How our kids enjoy their precious lives, and how we enjoy having them in ours. How we couldn't imagine life without them.


I am frequently told I am a special person. And as flattering and self-lifting as that is, its not true. I sat next to a Marine on my flight the other day, and thanked him for his service for our country. We got talking about where we were from, and kids and conversation lead to me sharing some of Fiona's journey. At the end of the flight, he thanked me for everything I am doing for Fiona. I kinda laughed, and said, " Its nothing to be thanked for, I just love her". He kindly replied, " I felt the same way when you thanked me for serving our country. Its nothing heroic to me, just what I love. Its just not what the average person would do." I kinda of got it then. I see why maybe people think it takes someone special to raise someone special. Because they are thankful they are not in my shoes. I thanked that soldier because he did what I did not want to do. And he thanked me because he can't imagine being in my shoes. But if the shoe is put on the other foot, if I was oversees, would fight for survival not kick in? If his sweet little girl had an extra chromosome, would he not try to make her life the best for her? I don't know how good of a soldier I would be because I would never allow myself to be one- I'm too scared. So many parents are too scared to find out what kind of life they would have if they welcomed their chromosomally enhanced baby into the world. "We never knew we wanted, and now we can not imagine life without"

6 comments:

  1. i love this. and it is so true. i never really thought about that before either, the whole thanking because you wouldn't want to be where they are, but you are right. and it is so so important to advocate for our kiddos, because they do deserve life, and love and family...and more than that, so many people need them, and have no idea that they do. so thank you!

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  2. Great post!! I for one am very thankful for the different ways all of us advocate...It's like the blogs we read, we all do it differently, we all share things in a different way, we all write in a different style...And there is no right or wrong way...As long as we speak up for our kids and share our stories, people will learn!

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  3. Great post! I love your conversation with the soldier...its all about perspective isn't it...and that is why the testing is so dangerous...no perspective!

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  4. Thank you for this post. Beautifully written :) Found you from the Blog Hop!

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  5. I just have to say that this is a truly awesome post. Truly.
    We mamas do every single day what 92% of the population refuses to. Something as simple as love our kids, no matter what......

    A hero never takes credit for their simple acts of heroism. I think that to be a hero it is required that you say "I'm just doing what anyone else would have" even when you know that anyone else wouldn't have.
    Your kids are gorgeous. Your pics are beautiful.
    :)

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