Why March 21?

The date of March 21 has been chosen as World Down Syndrome Day because people who have Down Syndrome have 3 copies of the 21st chromosome. 3/21

WDSD was first observed in 2006 by many countries around the world and in December 2011 the United Nations officially declared March 21 as WDSD.

Beth was born in 1986 so we've spent most of her life not celebrating WDSD so when it comes around I'm kind of at a loss of what to do. Should we do anything? 

There's merchanise you can buy, there's the Lots of Socks campaign (which, socks have nothing to do with Down Syndrome, it's just a fun way to bring awareness to it) where you're supposed to donate socks to a shelter, wear fun, silly socks for the day etc. There's a WDSD Conference at the UN Headquarters in New York... 

But tomorrow for us will look like this: Chuck and I will go to work, Beth will sleep in, then she'll wake up slowly and come upstairs to have some breakfast. Usually a bowl of cheerios and a banana. Or maybe a bagel and cream cheese.

Then she'll do some chores around the house, take a shower, do her laundry and then come sit at the kitchen table when I get home from work.

I'll ask her about her day and she'll tell me what kind of movies she watched, what songs she danced to and if she finished all of her laundry. 

I'll start dinner and when it's ready, she'll fill her plate and head back downstairs to watch some TV.

She stays up later than we do and usually goes to bed at... well, actually I don't know what time she goes to bed because I'm already asleep!

She sets her alarm if she needs to, then puts on her Cpap mask and falls asleep.

A pretty typical life.

 

Beth and Sharaya

 

 Beth and Diana

 So what are you going to do on March 21?

A Movie, A Photo Booth, and Chocolate

Beth was 20 years old when World Down Syndrome Day was established so we haven't really participated in anything. We went on one Buddy Walk, but we haven't worn the socks or T shirts or done anything really to bring awareness to Down Syndrome. But this year I decided to do a little something. It's not much but it's a start.

I've really liked the whole Random Acts of Kindness thing. I think that's good any day of the year! But to celebrate WDSD in a way that shows love and consideration to others just seems right to me. So I went on-line and copied a little note I'd seen, made a card - blue and yellow of course! - and filled some small baggies with chocolate. Then as we went about our day, I had Beth hand them out to people. I explained what they were for and why we were handing them out. The clerk at the drug store, the waiter at Red Robin, the cashier at the grocery store... everyone was overwhelmed and kept thanking Beth.

They looked at her. They thanked her. That's what surprised me the most, people genuinely engaged her, some for the very first time even though we're in these stores many times a week. I plan to do this again next year, but more of them and maybe something other than chocolate.

After we handed out all of our baggies, we went and saw Beauty and the Beast and we loved it! Before we went in we told Beth that she couldn't sing out loud because she knows every word to every song and we knew she would sing them! But she did very good and didn't sing at all, at least not loud enough that we could hear.

The music was wonderful, the sets were magnificent, the story... old as time. (Didja see what I did there?) 😊

 

  

We got there early so Beth and I decided to get inside the photo booth! I don't think I'd ever done it before but I think they turned out pretty cute!

 On Sunday we're meeting Nick at a different theater and she gets to see it again with him. She told me she hopes there's a photo booth there! We might have to keep at eye on those two!

Isolated

When I think back to when Beth was born, I get the feeling of isolation. Not that we were isolated necessarily, but compared to today I remember it as a lonely, isolating time.

I've written about this before, how if you needed help with something you picked up the phone and called. If you were curious about your child's diagnosis, you went to the library and looked through the card catalog for the books about children with special needs. Or in our case, 'Mongoloid children.' Yes, it was called that even as recent as the 80's.

My 1992 Websters Dictionary says, "Down's Syndrome: mongolism, a type of congenital mental retardation." That's what we had to base our ideas of the future on.

Nowadays parents ask a question on Facebook, "My child is doing such and such, do your children do this? What experience have you had with this?" And in minutes there is a thread of comments a mile long. Encouragement, resources, referrals.

I sometimes feel a little sad that we didn't have those kinds of connections. I wonder how different Beth's life would be if we had.

I guess we're coming up on World Down Syndrome Day. I said that slowly, out loud to myself the other day. World Down Syndrome Day. World. The United Nations has declared it so.

The United Nations!

My first thought was, 'the United Nations know we exist??' This is so mind boggling to me. I think of when Beth was 3 and she was playing in the front yard with the neighbor kids. The United Nations was the last thing on my mind. Let alone the world. I was just living day by day, trying to navigate this world of special needs. What did I need to do tomorrow? Why did I need to do it and what impact would it have on my daughter?

But I guess some parents decided more people needed to know about our kids who have special needs. They've advocated and lobbied for support and acceptance and awareness. Something I could never do, but am so thankful that they did. And now we have World Down Syndrome Day. That's just remarkable. Such an accomplishment.

Well done parents. Well done.

This Is Beth

3/21 is World Down Syndrome Day. Where we bring awareness to the world, about everyone who has 3 copies of that 21st chromosome. I've read stories of kids with Down Syndrome who 'light up a room', 'make friends wherever they go' and 'people are drawn to my child'.

Beth wasn't like that. She still isn't. As a 28 year old, she's shy, she struggles with her speech and she knows people have a hard time understanding her. But once she gets to know you, she can be a goofball.

 

 Beth is a daughter, granddaughter, sister, niece and cousin

 

 

 

 She's a sister-in-law...

 

And an Aunt

 

Beth usually doesn't like to be the center of attention

 

 

 

 She loves to play board games

Uno, Mexican Train, Scrabble...

 

 

And she's really good at them too!

 

She doesn't always like to have her picture taken

 

But most of the time Beth just likes to have fun. 

She doesn't judge.

She's content with her life.

She's fearfully and wonderfully made.

And God has a plan for her life.

This is Beth