What do you think when you hear Down syndrome?

I'll tell you the honest truth about what I used to think.

Short bus. The special class in school. Slow. Looks different. Hard to understand. R-word. I know what you are thinking. Seriously? I can't believe you wrote that. I am just being honest. But there is a reason I am telling you the ugly truth. Because it's ugly. And its an ugly world we live in.

You know why I thought those things? Because that was all that I was ever taught by society. When I was younger, I wasn't taught that it was inappropriate to call someone the R-word. In fact, it was considered a medical label not a derogatory word that hurt someone. Until recently, during Obama's term as president, the label existed in the medical field and is also still used by some medical professionals (sadly).

I didn't know that people with Down syndrome could be just like myself or my brothers and sisters. I had no idea that people with an extra chromosome could contribute to society on their own. And many people sadly still don't think they are. I just hope that I can help change someones mind. Just one. Then ten. Then one hundred.....

Now lets backtrack to about 34 months or so ago. We receive a diagnosis, over the phone telling me that our baby would have Down syndrome. Crushed. My heart ached. I cried until I felt all cried out. Then I was angry. I wanted to know why us? Why had I done everything I was supposed to and been so careful as a mother, would this happen to us? All I could think about was how she would be treated. How she would be different. Seeing pictures of people on the internet set me into another frenzy. Yet, I continued to learn. I embraced what would become our new world.

I tried to accept it as much as I could by educating myself and anyone that would listen. I met families, I met adults with Ds. I met a little guy named Patrick. He wasn't yet 2 at the time and he really helped me. Seeing how he acted like a typical 2 year old, really set my mind at ease. Did you know, began many of my conversations.

I was only 14 weeks pregnant when we found out so we had a lot of time to get used to the idea. By the time Leighton arrived, I was over the crying. All cried out and happy to meet our little girl. She arrived and while she had a couple complications upon entering the world, she was as healthy as we could hope for. She was our precious baby girl and I was overwhelmed with joy.

I still had those fears though. About what others would think. Probably because of my own past and what I thought of when I heard the words Down syndrome. Most of what I thought about with special classes, short buses and different looks had become my new norms so I was ready for those things. Accepted them into my world in a way. The fears of how she will be treated is what motivates me to advocate and teach people because I never had that. I was never taught differently than the ugly associations I explained before.

Yet, there's one that still makes me nauseated. That's the R-word. I hear it often. I hear it from some that are close to me. Usually it's followed with, oh, sorry. Or I don't mean it about Leighton. That doesn't really make me feel much better. I try to remember that I used the word frequently with those same excuses before Lb was in the picture. I had no emotional attachment to the hurt a word could cause.

Now I am much more careful. I choose my words more wisely - most of the time. I was a foot in mouth, kind of person on many occaisions. Now I try to think about the receiver of that conversation and how they might feel if I say something that may or may not offend them.

It causes me such heartache to think of someone calling my baby girl that word. Even worse than my own heartache is the day that she understands the definition of that word and hears it about herself. It's a meer thought that brings tears to my eyes and pain to my heart. I pray the day never comes. But I know it most likely will. I hope that I have taught her to be the wonderful self confident woman that I know she will be. I hope her spunk and her sassyness continue to shine and she handles the situation in her own Lb way.

I can't stop the world from speaking, but I can share with them our story and how that word makes my family feel. Bottom line, you might not say that Lb is (r-word) but when you say the r-word, you are using a term thats being meant to downgrade someone else; infering they are less than superior or that they may have a cognitive delay. Choose something else. Better yet. Don't be a jerk at all. Just sayin.

All I ask is that you THINK before you SPEAK.

Until next time...


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