That uncomfortable feeling…

Every day I search the news via google for stories relating to Down syndrome. For months now there’s been the news that there is now a simple blood test, done early during a pregnancy, that can detect Down syndrome with 99% accuracy. I’m all for testing, if it allows the expectant parents time to prepare and learn all they can about Down syndrome.

However, I do have a problem with headlines like this: “Blood Test Can Defeat Down Syndrome” . Huh. Really? Get the blood test and BAM! Cured!

No. It’s not a cure defeating the syndrome. It’s based on the notion that never again does anyone have to give birth to a child with Down syndrome.

This makes me sad. How can advocates and caregivers like myself keep banging the drum and chanting our mantras: “They are more alike than different! They matter! They are great people who happen to have an extra chromosome! They can do anything!” while the medical community is basically saying, “test early and terminate…it’s not worth the hassle.” How can we keep pushing for the rights of individuals with special needs, while so many are saying they shouldn’t even be born: that their lives are somehow worth less than a “normal” baby?

You can say you’re for the rights of those with special needs, but they will never be equal as long as terminating them out of existence is an option.

Here’s a story that made the news this week: Leto High School valedictorian gets $120,000 in scholarships. What makes this remarkable is this quick mention in the article: “He was born two months early, weighing just 3 pounds, but otherwise healthy. His parents were relieved. Months earlier, doctors told them he would have Down syndrome and advised them to terminate the pregnancy.”

Now granted, 18 years or so ago the tests for Down syndrome weren’t as accurate as they are today, but thankfully his parents ignored the warnings of the doctors. Good for them and good for those who also choose life and just happen to have a child with Down syndrome.

I know we wouldn’t trade Presley for any other kid in the world. She’s ours. She’s us. She’s not perfect, but neither are we. She softened our hearts. She’s taught us to look at the world differently. She’s shown us what really matters.

Life is meant to be appreciated and she shows us that every day. Yeah, it’s exhausting. It’s not always sunshine and fellowship. She can be a stinker sometimes. As a parent I lose my cool sometimes. But when she does cross those milestones or accomplishes something for the first time without help and she is glowing with pride, I am so grateful we have her. I am so proud of her. I get an uncomfortable sadness knowing that many would see her as a burden and not want her. I’m not sad for her though, I am truly sad for them not being able to open their hearts to embracing all the curve balls and 4 leaf clovers that life throws your way. Tragedy strikes everyone at some point of their lives…having a baby with Down syndrome isn’t one of them.


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