At school yesterday, we wore our silly socks for World Down Syndrome Day. Today is actually WDSD, but since there isn’t school on Saturday, we celebrated on Friday. As the other teacher assistants and I walked down the hall to pick up our students from the bus, we talked about our socks. I said that, on some level, I didn’t really like this celebration, because every day should be a celebration of individuals with Down syndrome. Then I thought, What a humbug I am for saying that.
When Wil was younger, I was very into this celebration. But back then, I was also new to this journey with Down syndrome, and I think I was celebrating his diagnosis as much for myself as I was spreading awareness.
When Wil was born, I needed celebration. I needed to hear that everything was going to be okay. I sought that out hard. Any celebration of Down syndrome I could find, I clung to. But then, over time, the celebrations began to come on their own. They were not big, worldwide, put-posters-on-the-wall-at-school-and-shout-it-out-on-social-media kinds of celebrations. They came in the form of Wil saying a new word, demonstrating a new skill, taking a new step, making a new friend, or a friend showing him a new form of kindness.
These were the celebrations that only those who live this life up close get to see. There is no fanfare outside our circle, but the feeling of celebration is more powerful because of that. The earlier pain of what we once believed we had lost was transformed into new forms of joy.
Don’t get me wrong. Rocking our silly socks is fun. It’s a creative, accessible, enjoyable way to spread joy and awareness. It’s a way to come together, point out our silly socks, and smile and laugh.
But for a new mom, those funky socks may look good from a distance, and that’s exactly what they are: joy at a distance. And joy at a distance is a good thing. But when you are carrying the pain of hearing your child’s diagnosis, you need something to hold on to. You need a kind of joy you can actually grasp, and silly socks, even when they symbolize joy, just aren’t enough.
You need another parent who has gone through what you are just beginning to hear say, “This journey will be full of joy, even if you don’t realize it yet.” That kind of statement is ethereal, yes. It may feel like trying to grasp a cloud. But you can breathe in the spirit of it with everything you have, breathe it down deep, and hold it within you. When it is shared deeply and personally, it is not just a passing date. It is not just a pair of socks. It is a promise, and your heart knows it.
It has been 19 years since I first heard those words. I may not have them exactly right, but the essence of the message is still within me. And that promise has come true over and over and over again. It continues to.
So I wear my fun socks. I do celebrate this day. Spreading awareness will always be vitally important. But the essence of true awareness, the essence of the true value of individuals with Down syndrome, is known deep in our hearts. It is learned through lived journeys. It is learned through experience. It is learned through promises given to us, and through the promises we share with others.
(WDSD is on 3-21 representing 3 copies of the 21st chromosome. If you hold up socks, they resemble chromosomes.)
'WIL'ingness = Willing to Embrace Extra in Life 