What does World Down Syndrome Day mean to a family like ours?

I thought long and hard about this question over the past week.  See, in our household, we celebrate ability on a daily basis.  We cheer for every inchstone and welcome friends with Down syndrome into our home and into our lives on a regular basis.  Our boys see right through the diagnosis and celebrate the child or adult behind it.  Thank God for that! 

Actually, that’s a little bit of a lie.  They see Down syndrome – they can pick out a person with Down syndrome in any room.  But their world is much different than the one I knew.  See, the day we received a Down syndrome diagnosis for our unborn child, I wept.  I wept for a long time.  My heart was shattered thinking of all of the things my daughter wouldn’t do – or I wouldn’t get to experience as a mom through my daughter.  I had no idea.

I made these shirts for the boys to wear today for World Down Syndrome Day.  When I excitedly showed them to the boys, Lance wasn’t a fan.  When I finally had time to sit him down and talk about why he didn’t like this shirt, something he said really struck me.  He repeated it yesterday when I told him we were taking this photo later.  He said, “I don’t like that shirt because it says that my sister has MORE of something than someone else.  And Mom, it’s not nice to brag.”  WHAT?  At first I was a little taken aback.  I thought maybe he was ashamed to be wearing the shirt… announcing to the world that his sister is different.  Turns out, he was hesitant to wear the shirt because telling the world that she had Down syndrome was bragging. 

Oh, thank you sweet Jesus! 

I didn’t have the heart to tell him that we’re wearing it to CELEBRATE Down syndrome in a world where other countries are celebrating the elimination of babies like his sister.  I didn’t have the heart to tell him that his sister will be seen as “less than” to some people… and we are busting our tails to change that.  I couldn’t tell him that kids like Ellie are institutionalized and marginalized all over our world even today.  I didn’t have the heart to be completely transparent about how I used to feel about Down syndrome.  How would he feel if I told him that knowing his sister had Down syndrome had me in tears for so long?  How would he see his sister then?  I can’t bear to think of that.

To Lance and Kaleb, Ellie is Ellie.  They know she has Down syndrome.  They know that means she has a lot of appointment and that she had therapists at our house all the time.  They know that it will take her a little longer to learn to do some of the things that other kids do – but they also know that in time, she’ll conquer all of the things she sets out to conquer.  Kaleb is jealous that Ellie gets to ride a school bus because she has Down syndrome.  How funny is that?  Well, he just knows that she gets to ride a school bus because she had lots of therapy when she was little and the other kids who ride her bus also had therapy.  But he also knows that she had therapy because she has Down syndrome. 

My boys have their faults, just as every other kid does, but their perspective on inclusion and acceptance is remarkable.  I wish that every family had a chance to experience life as our family is experiencing it – I really do.  It’s incredible.  In a world where the “R” word is still used on a daily basis, we desperately need kids who have grown up with a sibling, cousin, or friend with a disability.  We need their innocent love and respect for all of humanity.  We need others to see that we really do have something to brag about when we know and love someone with Down syndrome.  We need the world to see the ability.  We need the world to see the beauty – even in the midst of struggle sometimes.  We need a world that is proud of diversity instead of a world trying to eliminate it.  We need people with Down syndrome – and they need us to speak up against discrimination and bullying.  They need us to show the world just how amazing life is with them in it.  They need us to educate the public and push for more accurate delivery of a diagnosis.  And I need my boys to show me the way because I did not grow up with a sibling who had a disability.  I did not grow up knowing this beauty.  If someday they’re sitting with their future wives and receiving a diagnosis – I pray that they celebrate it, knowing how lucky they truly are and how lucky their friends and family are to experience this with them.  I pray that they’re eternally better people because of their sister.  Those same little boys fight over who gets to live with Ellie when they’re grown if Ellie doesn’t want to live on her own (notice I said “doesn’t want to” and not “isn’t able to”).  They want to take care of their sister – they absolutely adore her.

THAT, my friends, is what World Down Syndrome Day means to us.  Side note:  this is the first year that we've planned ahead for WDSD and made up materials and such for the kids to bring into school - and the snowpocolypse of 2018 arrived and delayed those plans.  Soooo - looks like we'll be wearing our crazy socks to school TOMORROW and bringing stuff for our classes.  Oh well.  I guess it's appropriate to have patience for something like this, right?

About the shirts:  we're actually having a bunch of these made - with custom verbiage so that anyone in our giant Down syndrome network could order one.  We'll have shirts that say, "My sister has more chromosomes than yours does", but we'll also have ones where sister is replaced with: brother, kid, grandkid, cousin, niece, nephew, and friend.  If you can think of something else you'd like on these, we might be able to work that out.  We'll start selling these soon as a fund raiser for Walk Your Socks Off 2018 (which will be held May 19th).  If you're interested in buying a shirt, keep an eye out for my post soon.

We sent out reminder cards to classrooms that included facts about Ds for parents.  Lance will be reading a book to his 1st grade class and they'll be coloring these butterfly pages.  There are facts about Ds geared for kids on the back of the coloring page.  Each kiddo in Lance, Kaleb, and Ellie's classes will get a sticker with the Ds ribbon that says, "Together we can make a difference" and a bag of colorful goldfish crackers with a note saying, "World Down Syndrome Day March 21st - We are more alike than different"  Cards and coloring page are compliments of Three with a Twist

We didn't celebrate Ellie's 1st WDSD... because it was our 1st day home from Cincinnati.  We celebrated by training our first home health nurse and having a mental breakdown.  The photo above was from 3.21.16

World Down Syndrome Day 2017

Here is a close up of the shirts.  The math nerd in me was super excited to make Ellie's 47>46 shirt, too.  I wish B had taken a picture of the shirt he made last night and posted it... it's pretty stellar.  I made these shirts... the ones we'll sell as a fund raiser will be much better quality - screen printed ones.  

Have I told you that for Pi Day in high school, I made shirts that were covered in colorful bubbles on the back and each bubble had a number in it... I wrote out Pi to the 20th decimal, I think.  The math nerdiness is strong with this one!