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 Babycenter.com 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.