Better late than never, right?
What is World Down Syndrome Day?
WDSD is a global Down syndrome awareness day that occurs every year on March 21st. The date 3/21 is significant because Down syndrome occurs when there are three copies of the 21st chromosome.
People celebrate by participating in various fundraisers, awareness campaigns, and most famously by rocking crazy mismatched socks.
This year was a quiet year for us.
The first WDSD that came around after Nicholas was born was a tricky one for me.
Even though I loved my son, I wasn’t exactly ready to celebrate it. To me, Down syndrome represented a shock that sent me into a major downward spiral.
However, my colleagues at my elementary school helped me turn it into this amazing day that allowed me to not feel so isolated in my experiences with Nicholas.
The second year was a big deal. We had more time to plan and prep. The t-shirts were way cooler, I was pregnant with Marley and just overall excited about motherhood.
The third year was epic. Nicholas was a newly chosen global ambassador for Nothing Down. We took our small school celebration and expanded it to the entire school district.
We were in a place in our journey where we were ready to shout our son’s worth to the world. Even though we raised a lot of money for Nothing Down, our celebrations were interrupted by COVID-19.
This year is our first quiet World Down Syndrome Day. The book that I’ve been writing as a gift to my fellow mothers happened to be due to the editor the day after.
After accepting the fact that I’ll never really be done with it, I stayed home all day to make whatever final changes I needed to make.
That meant staying home while my family had their Sunday dinner without me. The FOMO was real.
“I am missing World Down Syndrome Day with the kids,” I said to Nick with guilt written all over my face.
“It’s okay. You’re missing it for Down syndrome. You need to finish this book.”
He had a point, but it still felt kind of sad. BUT, Nicholas and Marley had a wonderful time at their grandparents house on the gorgeous day that it was.
I’ll just have to kick the celebrations up a notch next year!
There are still people who think this is a sad day.
Every now and then, I took a break to read the messages I was receiving. Since it was a big day within our community, my phone was exploding with messages.
“Happy World Down Syndrome Day” was the common thread on my phone.
One message took me by surprise, even though you’d think I was used to it by now.
I am so sorry that your son suffers from Down syndrome.
This message came in the middle of a break that was admittedly way too long.
I was extremely thankful when it did, because it reignited my fire. I realized that my book isn’t just for new mothers. It is for everyone who cares enough to understand more.
You see, just the act of sending this message shows that the person cares a little. So, maybe they have the potential to care enough to learn more.
People do not suffer from Down syndrome.
That extra chromosome might cause certain medical complications for people, but Down syndrome is not something that causes people to suffer.
If you follow us on social media (Instagram / Facebook), you know that Nicholas is a happy kid. The only time he really suffers is when I tell him he can’t have a third ice cream sandwich.
I am hoping that my book will do more than support new moms, as was the original goal. I hope it can act as a tool to show people that Down syndrome does not cause suffering.
People’s reaction to it does.
Thank you all for your kind messages last week! Happy Belated World Down Syndrome Day!