Liebster Award: Using My Powers For Good Instead of Evil

The first Liebster-qualifying question posed by Bright Blue Line, “What Inspired You To Start Blogging?” is addressed briefly on my “Get Down With Me” page. I’ll try to expand without boring you.

I’d like to preface this by saying that I am pro-choice. Whatever your position, I respect your right to your opinion and I expect the same from you. This post is NOT an invitation to debate that issue. I just don’t want what I say next to be misinterpreted as an argument for outlawing abortion. It is simply an argument for access to information.

Currently, 97% of pregnancies testing positive for Down syndrome are terminated. Ninety-seven percent. There are hundreds of thousands of people with Down syndrome living in the U.S., but most of those people are not part of that other three percent. Most people with Down syndrome were diagnosed after birth. All that is changing. There are now several tests on the market that can screen for Down syndrome earlier, more accurately, and less invasively than ever before. Easier, more efficient screening means more prenatal diagnoses – and more terminations.  This information was what pushed me out of my comfort zone and into the blogsphere.

I don’t have a problem with prenatal testing; I had prenatal testing. However, have you ever heard the phrase “knowing just enough to be dangerous?” It means a person has knowledge, but just enough knowledge to provide a false confidence, and not nearly enough to know all the possible consequences of their actions.  When medical professionals provide expectant parents with a diagnosis but no additional information about Down syndrome, they are really giving them just one piece of the information they need to make an educated decision. Prior to testing, my husband and I had discussed the possible outcomes and decided that we would not terminate the pregnancy if the baby had Down syndrome.  Yet, when I heard the diagnosis, my first instinct was to terminate because I didn’t know anything about Down syndrome. Like most people, I was afraid of the unknown.

I took to the internet, intent on informing myself before making such an important decision. I found a lot of statistics.  I found reports of all the medical problems that could affect a person with Down syndrome. I found a lot of outdated information. I found a lot of postings from other mothers and fathers looking for answers, just like me.  I did not find what I was looking for – What is it like to live with Down syndrome?  What does it take to raise a child with Down syndrome? Ultimately, thousands of families in the U.S. alone will be put in that same position each year.  I hope when they Google “Down syndrome diagnosis” my blog will pop up, along with the others that have started showing up on the web in the last few years. I hope that I am helping these families make an informed choice. I believe that some of them will choose to continue their pregnancies.  I am glad I did, and I think other families will feel the same.

Basically, I decided to use my powers for good instead of evil.

For now.

Photo credits: josavill.com, theidsc.org

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I Am Three Years Old


AAAAAAAAHHHHH!
AAAAAAAAHHHHH!

My name is Evelyn. I am three years old. I am stubborn, “spirited”, and funny. My idea of a perfect evening is curling up with a good board book, some goldfish crackers and a nice vintage juice. I enjoy the company of stuffed monkeys, the intelligent drama of “Signing Time,” and the musical styling of The Laurie Berkner Band. My hobbies include dancing, playing dress up, coloring on anything but paper, and throwing anything that is not a ball. Just for fun, I talk in a voice that sounds like Linda Blair in the The Exorcist. I excel at annoying my brother, tormenting my sister, and sticking both fingers up my nose at the same time in the car and saying “Mama – Look!” – because I know she is driving and there is nothing she can do about it.

Take a picture of THIS!
Take a picture of THIS!

I am adorably and alarmingly audacious. I stack books on boxes on small chairs on coffee tables and try to convince people it’s a good idea for me to climb up there. I jump into the bathtub like it’s an Olympic swimming pool. I dance in public – I don’t care who is watching! I once rode solo in a shopping cart across the Lowe’s parking lot and I love taking off on my own to explore large, crowded public spaces.

Like most three year olds, I think I am the center of the universe. So many people love me, and I’m pretty sure their role in life is to orbit around me and fulfill my every need and desire. They have been caught in my gravitational pull since the universe was created, and will stay that way as long as I exist. I make the rules in this universe – I think that if I cover my face, you can’t see me because I am a really good hider. And like most three year olds, I like to do things my way. On my first day of school, I refused to stand up and have my picture taken, I don’t like when my foods touch each other, and I am way too cool to hold my mom’s hand.

1st day of school
1st day of school

Also like other three year olds, I am not a “little angel” – I am a unique person with complex thoughts and emotions. Please, don’t take away my individuality by assigning me a personality based on my chromosomal make up. Saying that children with Down syndrome are sweet and loving all the time is equivalent to saying Asians are good at math, Jewish people are great with money, or African-Americans are good at sports. Just because the trait that is assigned is not negative doesn’t mean it is true and it doesn’t mean it is okay to define a person based on just one aspect of who they are. Yes, I am fearlessly friendly and I give the  best hugs – when I feel like it. But I will also unroll the toilet paper or shred an entire box of tissues, given the opportunity. Because that’s who I am – I am three years old!

In honor of World Down Syndrome Day, please watch this video from the International Down Syndrome Coalition to meet a lot of other people and allow them to tell you who they are. They are not three years old (mostly), and they are all different. I know you will watch it – because I make the rules in this universe.