Friday, January 28, 2011

The Tsunami

When it comes to emotional topics, I like to write a blog post after I've reached a conclusion, when the emotion is past and I feel I've resolved something within my mind. 

But my emotions are running high right now and I feel there is no solution. There will be no tidy package with a neat little bow for this crisis.

My heart literally aches over the 92% termination rate for Down syndrome pregnancies. I am burdened for the women who have made the choice to have their young killed out of fear, ignorance, and, yes, selfishness. I am burdened for the lives of children eliminated and tossed away simply for being different than what was expected. 

And I am terrified for the many yet to be targeted. A test is coming that will guarantee the almost complete annihilation of a whole class of people. Right now, many women give birth to babies with Down syndrome unaware. They are surprised to discover soon after birth that their child is sporting an extra chromosome. While they are usually shell-shocked initially, love for their child saves the day and they come to learn that life with an extra 21st chromosome is a life worth living. Most eventually discover that they wouldn't change a thing, even if they could.

Soon, a surprise like that will be almost unheard of. A simple, non-invasive, accurate blood test will be available within the year to diagnose Down syndrome during pregnancy. Some women will still choose to continue the pregnancy. Most will not.

You may think I am being overly dramatic, but I have heard too many mothers of children with Ds, honestly confess that they are glad they didn't know. They don't know what they would've done had they had a prenatal diagnosis. I have read too many negative comments following news articles about the new test to pretend like it is good for women to have "all the information available to them." And I have read too many stories from women who were pressured to terminate in subtle and blatantly obvious ways from the healthcare professionals treating them, to believe that these women are being given accurate and current information and making informed decisions.

Honestly, I barely see people with Down syndrome in my community as it is now. 

I advocate all the time. I spend more time than I should on birth boards, the amniocentesis board, the prenatal testing, and poor prenatal diagnosis boards of giving accurate information, showing pictures, and sharing snippets of normal life in an effort to dispel some myths and fear surrounding Down syndrome. I blog about our life and our boy. I post articles and facts on Facebook. I take Eon out into the community and "show him off".

I fear it does little good.

I feel like I am standing on the shore with a cup, trying to hold off a tsunami.

There is a tidal wave of ignorance, bigotry, misinformation, deception, convenience, ambivalence, and fear threatening to wipe out people like my son. My cup of truth seems paltry in comparison. 

I feel discouraged and helpless.


  1. Do not be afraid or discouraged, for the Lord your God will be with you wherever you go.
    Joshua 1:9
    This verse popped into my head as I read your post Tara.
    My hubby and I discussed this prenatal test last night. You are doing a great job informing the world about Eon and ds. Don't be discouraged.
    hugs to you,

  2. All things are possible with the Lord. You may be the cup holder in the tsunami. But know that you are sharing that fight with the rest of your children. And who knows which (if not all) will take up that cup to fight. Simeon was fearfully and wonderfully made for a reason. He might grow up to be a whirlwind and make a huge difference for the Lord. Keep up the fight! I know you made a huge difference in my life.

    Rebecca Mexin

  3. Sweet Tara, this is not your burden to carry, it's God's. I'm sure He has things for you to do in it, but this heavy, emotional burden-that's for God. Choose joy, it says in James 1, in all situations. What is there to be joyful about in this situation? Try to focus on that.

  4. We may not think we are doing a lot, or enough, or raising awareness in ways we can actually see...But we are, each one of us who simply loves our child unconditionaly, we ARE making a difference...Each small thing counts, it does, and every small thing we do or say is noticed by someone around us, even if we dont realize it.

  5. Oh my goodness, I feel the exact same way, completely! I get so overwhelmed with what seems like a daunting fact, I haven't even posted on this topic because what I have written comes off as totally judgemental and I am trying to get my heart in the right place before I post something that would chase people away when I really want them to listen. Know that you are doing what God is asking you to do and He will take care of the rest, keep on doing what you are doing, if even one life is saved because of you then it is all worth it!

  6. Hey I just came upon your blog after seeing your comment on Pelly in my Belly blog. I have briefly heard of this test. And for people to seriously think:
    it is good for women to have "all the information available to them."
    In fact they DON'T have all the information! They don't have the correct info on actually raising the child with DS! Oh but I preach to the choir. I know how you feel! I guess if enough of us carry cups we can catch the tsunami?
    I feel SO lucky that my OB did not sway me to test. I told her my hesitations on testing, since I would NOT abort my baby regardless of results. She was awesome to tell me, eh just skip the stress and forget the tests! (Not that it would have changed anything except added stress to a happy pregnancy!) I have learned from other people about the pressures that doctors and nurses give to test and abort! How horrible.
    Look forward to keeping up with this blog!
    Mari Jones

  7. Hello Tara, I'm so glad to have found your blog. I loved reading your post and I share your angst at the lives of these precious ones that are never realized--knit together by a loving God who makes no mistakes. My brother Erik has DS. He's 50 now. When he was born there were no sonograms to give advance knowledge. My parents were told upon his birth to put him in an institution. That was the normal response in the early 60's. They didn't follow that advice. And Erik became a wonderful member of our family and went on to do amazing things. I just started a blog about his life. Before I did that I couldn't find any other people writing about adults with Down's but now I'm slowly finding others. You have a ton of links to other blogs and I'm so grateful. Hug your little Eon! He is a gift! But I know you already know that. :)