culture & community health

Shining a Light on Down Syndrome Awareness Month

by Meghan — October 29, 2020
Close up on little girl's face. Celebrating down syndrome awareness month. She is smelling a flower and light on her face.

October is Down Syndrome Awareness Month. To celebrate, Meghan interviews one of her favorite little people, her niece, Lux.

People, let me tell you ‘bout my best friend… one of my absolute favorite humans, my niece Lux. I’ll tell you about her and my other nieces and nephew because I’m obsessed with them, and with being an aunt in general. It’s legitimately the best thing I get to do, but I digress…

The reason I’m writing about Lux is because October is Down Syndrome Awareness Month and my girl was born with Trisomy 21, aka Down syndrome or, like I tell her, just a little extra DNA. I won’t bore you with data and stats about Down syndrome because you can Google that if you really want it. The thing I want to focus on is the person I love and the things she’s taught me or made me aware of.

My sister says I’m Lux’s person. I think she’s right, minus the whole dead bodies Grey’s Anatomy reference. In some ways, Lux is my person too. She’s the person who makes me feel the most loved and the least judged I have ever felt. That’s a powerful feeling. And for her, I’m the person she tells everything. Like maybe it didn’t happen unless she tells me. That’s how bonded we are, she is my shadow and I wouldn’t have it any other way.

I think she makes our whole family feel that way but there’s another layer to it for me. Sometimes, having cerebral palsy (CP) is really hard and – let me be real here – it can suck. When times get hard, and I want to give up because my body doesn’t work – and it hurts, I know I can’t give up because she’s watching. She’s going to have hard things in her life because that’s life; some things will be harder because of her diagnosis. I want her to see me and go well Meggie did that so I can do this. She’s given me the opportunity and ability to be an example without any of the ableist garbage I have to put up with from other people. She gives me purpose on the hard days.

Disability is something I’ve dealt with, and my family has dealt with, my whole life. So I thought maybe Lux would have an easier time with my mom available to guide my sister through raising a child with a disability. And that somehow my experience could guide Lux through how to survive the slings and arrows her disability would hurl her way. In some ways that was naive of me to think that because I know people have been mean to her before, and I’m sure she feels different or othered more often than she can say.

It breaks my heart for her when she asks me why people are mean and I don’t have the answer as she’s come to expect from me. She is so quick to forgive. It doesn’t matter if it’s her brother, or a bully. If they’ve wronged her, she’ll cry like the world is ending for a minute, then she will wipe her eyes, and forgive and forget. I wish I was capable of forgiveness like that. It’s one of her lessons I’m still trying to learn.

There’s this thing I see in the media all the time that I hate. The media commonly portrays people who have Down syndrome as always happy. They aren’t. They’re human after all and they experience every emotion in the world. Trying to dumb any human down to a one-note existence of happiness means you miss out on their depth of character. And boy my girl’s got depth. Lux is so smart and funny. She’s a prankster with a penchant for duct tape. This girl is capable, she likes to help me do pretty much everything. When you make her mad – watch out – she’s gonna cut her pretty brown eyes at you and mean mug you into submission. Lux is so stubborn it genuinely makes me happy – unless it’s directed at me!

A Tea Party, Aunt Meggie!

A couple of weeks ago she decided we were going to have a tea party, which has absolutely nothing to do with tea. It just means getting dressed up to eat lunch. She called up (as she often does) to tell me what’s on her mind and this time we planned the tea party. We went on to talk about my lack of a boyfriend, why wasn’t I married already, and did I eat my broccoli today? (so that I could walk!) and many other topics. So, naturally, I forgot about the tea party plans.

However, Lux did not forget. She never forgets, ever. At lunchtime she barges in, opens my closet, pulls out her favorite dress of mine, and a bra. I begged off because covid depression is real and I legit did not want to put on a bra to sit in my room.
“Lux, I don’t wanna get dressed, baby.”
“But it’s a tea party.”
“Meggie, you need to put on clothes. I dress you.” Which she knows how to do because she watches my caregivers and learns very quickly. So I shoot off a text to my mom hoping she’ll bail me out.
Needless to say, I ended up fully dressed – with makeup on even – to watch Garfield cartoons. Though it’s a humorous story, it shows you my girl is determined when she wants something. Lux made me realize that I’d been in a funk that day, and she reminded me to stop, and enjoy the little things. And that sometimes you really should get out of your pajamas.

Interview for Down Syndrome Awareness

I want to teach Lux to advocate for herself. I want her to know she has a voice and to use it loudly. So, I decided to ask her a few quick questions and let her speak for herself:
Lux, I know that you know you have Down syndrome but I was wondering if you knew what that meant? No. I don’t.

I asked if she wanted to know what it meant and she said yes.
Then I shortly explained that it meant she had extra DNA and it made her extra awesome. Careless shrug okay.

How do you feel about having down syndrome does it make you happy? Does it make you sad? Or is it like with Meggie’s legs it’s whatever, I don’t really care? Just happy.

What is your favorite thing about yourself? My favorite thing about you is how big your heart is and how helpful you are to Meggie all the time. You also give the best hugs!

After a short yet hilarious commentary on why she was the only one who ever helps me really she landed on: I like being happy.

I know you’re going to tell me you’re already a grown-up because we have that conversation all the time but I was curious about what do you want to be when you grow up? Do you still want to be a chef or has it changed? I want to grow up and cook dinners, healthy stuff. But I don’t know how yet.

This month is Down Syndrome Awareness Month in the United States (which is where we live) and part of Down syndrome awareness is helping people to understand what Down syndrome is and how we should treat people with Down syndrome. One of the ways to do that is to send positive messages out into the world. So if you could tell the whole world anything you wanted, what would you tell them?

After I explained what positive messages were she told me she: wants people to be nice.

The thing I wanted most in writing this for Down Syndrome Awareness Month is not to lecture on how to treat people with disabilities, but to just show the person. Lux’s name literally means light. That’s no accident. She is such a bright light and the world can use a lot more light. She is so many things to so many people.
She said it best…

Just be nice.”

*Photo of Lex by: Katie Adcock

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