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?

Feeling The Loss Again, Like I Did When She Was Diagnosed

We were at church a few weeks ago when a friend came up to us and whispered to Chuck, "What is your daughter's name again?"

He said hi to Beth and then reminded us that they were in the youth group together. Of course! He's in his mid thirties, he's a guy she grew up with and they had some of the same friends. 

He's her peer.

But he's also been married for years, has three children and is a financial officer. His life is very different from Beth's.

The stark differences just... I don't know. It just left me speechless. 

I know Beth is different from other people in their 30's but I hadn't really thought about it in a while.

I haven't thought about how far behind Beth is from other people her age in a long time. We're just sort of passed that and we're living our lives day to day just like everyone else. 

But after hearing him say they were in youth group together just brought it all back.

And he wasn't being mean at all. He's an a-m-a-z-i-n-g young man, an incredible father and husband. He just stopped to say hi to an old friend.

And I'm finding it hard to describe the lump I have in my throat because of it. Because my oldest daughter isn't like her peers. Not even close. 

You know how you watch your kids grow and change and it's not too big of deal, but when you haven't seen your friends kids in a year, it's like, "Oh my gosh they're so tall!" I think if Beth was around typical 30-somethings all the time, it wouldn't be that big of an issue. But she's not and the difference between those two was just huge.  

After re-reading this I think maybe I'm grieving again. It hit me - again - that my daughter isn't normal, that she has a diagnosis that changes her life and ours. She won't move out and get married and drive her kids back and forth to school and take vacations with her own family... but even if she does one or two of those things, it won't be the same as when Sharaya and Diana did them. 

It'll be much harder and she'll need constant support.

I guess I'm feeling the loss of a 'regular' life for my daughter. Especially after seeing his life and realizing the huge differences between the two.