Down Syndrome Isn't a Bad Word

Its that time of year again! Rock your socks for World Down Syndrome Day! This day was chosen because Down syndrome occurs when there are three copies of the 21st chromosome.

We area little over three years into our journey with Down syndrome. What’s really been on my mind lately is that I want people to know Down syndrome is not a bad word. You don’t need to say it in hushed tones or with a sad, confused or embarrassed look on your face. There is absolutely nothing wrong with having Down syndrome and there is nothing wrong with talking about it.

I am proud of both of my daughters. I am proud of who they are becoming. I wouldn’t change them for anything. And that includes Lulu‘s extra chromosome. If she didn’t have it, she wouldn’t be her. And if you know her, I’m pretty sure you love her. She’s amazing. She’s seriously funny, she’s smart, she’s very very kind and tender hearted, she’s absolutely beautiful and she is fiercely determined.

She can do anything in this world that she chooses to do. She can go to college, she can have a career, she can live independently, she can get married… she can do whatever she wants to do.

I am well aware that years ago parents couldn’t say that about their loved ones with Down syndrome, but those days are gone. I say in all confidence that my crazy little chromosomally enhanced kiddo can. People much stronger and smarter and braver than me have been fighting the good fight for our kiddos for so long that I get to say these things. My daughter can just be herself.

There is still work to do though. There are still parents who get their child’s diagnosis and cry. I was one of them. I was scared. I didn’t know what I know now. Down Syndrome isn’t a bad thing. I want to do what I can to help the cause. Mostly, we advocate — as I have said before — by letting Lu be Lu. We let her change people’s perceptions. We put her out there in all the regular things.

This brings me to my main thought these days: I want you to ask me about Down syndrome. I certainly don’t know everything… but I do know Lu. I want you to ask any question; I want you to talk about it and say the words “Down syndrome” as part of the conversation. It’s not a bad word.There is nothing wrong with having Down syndrome. There is nothing wrong with Lu. She’s awesome.

When I say Down syndrome or talk about it now, my face lights up. I smile. Sometimes I still cry, but its not in a sad way. It’s because this child with her perfectly placed extra chromosome has changed my life. Three of my now closest friends are also in “the club.” Their guidance in this journey has been priceless.

Mostly, it’s just Lucia herself. I’m not ashamed of her 47 chromosomes. Honestly, most of the time we don’t even think about it. She’s just Lu. Down syndrome is part of who she is, along with her gorgeous hair and sparkling personality.

So for this World Down Syndrome Day, I would just encourage you to say the words. To talk about it… how we are all more alike than different, to not be embarrassed to ask questions, to learn, to meet people with Down syndrome and get to know them. It’s definitely not a bad thing. And you will be a better person for it.