Why I Decided To Celebrate World Down Syndrome Day This Year

by Heather Longo
Heather Longo

March 21 is World Down Syndrome Day (WDSD). As a mom to two toddlers, I often don’t know what day of the week it is. But I know this special day is approaching because a week ago, my Facebook feed starting filling up with invitations to “rock my socks” and “see the ability.”

I love being a part of the Down syndrome (DS) community and think all individuals with DS should be celebrated every day. But I’ve thought about sitting this one out. Honestly, there are times when I wish I could take the day off from DS. Like when I walked into my typical daughter’s room one day to see her unzipping the footie PJs of my daughter with DS. Grace lacks the strength and dexterity to perform this skill, which Abigail, 19 months her junior, mastered months ago. And while it was adorable, that wasn’t my first thought.

Instead, it was a flash-forward to forty or fifty years from now and a wish that if Grace has Alzheimer’s then (which her extra chromosome makes frighteningly likely), Abigail will be there to show her that same tenderness and patience. Or when Grace is lovingly caring for one of her dolls, and someone says she is “such a good mommy.” And my heart breaks a little, because even if that’s something she wants some day, the reality is it’s likely not possible. Or when I think about us taking a family vacation but feel guilty using that money when it could go toward a fund that will help cover Grace’s expenses after we’re gone.

These are normal parental worries, right? We all know loved ones who have battled devastating diseases, pined for unrealized dreams, and suffered financial challenges. The difference is that DS robbed us of the years of ignorance many parents are afforded. We’ve known from birth about the risks and possible challenges my daughter’s extra chromosome imposes on her life, so it gives our inevitable worries both convincing odds and a context of reality that many parents don’t realize right away. And like chronic pain or your teenage daughter’s boyfriend who just won’t seem to go away, there is no break from DS. It is life as we know it.

As much as I’ve come to tire of its negative consequences, though, I’ve grown quite attached to the condition. Seeing babies at the store, I’m often disappointed when a good look at their faces reveals a notable lack of DS characteristics. Seeing another person with DS instantly ignites an unspoken bond with families I barely talk to but who understand the joys and challenges that a loved one with DS can bring. Of course, DS is a part of Grace. It doesn’t define her, but it contributes to who she is, the most gregarious, enthusiastic, genuine, loving, and persistent person I know. You might think that’s a mother’s love talking. But I see her touch people daily.

The same thing that kept me awake nights when she was an infant – that she would be noticed solely because of her DS – I now realize empowers her to impress people, leaving them always with smiles on their faces, high-fives in their pockets, and hopefully changed perspectives on what DS means for an individual and a family. When countries are actively working to prenatally exterminate DS and individuals feel the need to explain why their lives are worth living, I’m happy to let my daughter dispel misconceptions rooted in antiquated beliefs and change peoples’ hearts, just by being her. I can confidently say that my life is daily enriched by Down syndrome. But that’s not reason why I’ve decided I’m going to pull up my socks and celebrate WDSD this year. This is:

The blocks were a gift for Abigail. She has shown greater interest in and ability to use them. Grace’s fine motor delays mean she struggles with lining up and appropriately applying pressure to the blocks to bond them without crushing her structure to pieces. I watched as Grace patiently and repeatedly tried to line up the same block, so it would click into place. When my hand encroached on her space, she reminded me that she was capable with a firm “Help, no!”

In the time it took her to haphazardly place a single brick, Abigail had neatly nested at least six blocks into a perfect, multilayered rectangle, filling spaces like a Tetris champion. Conversely, the asymmetry and precariousness of Grace’s top-heavy structure made my Type-A eye nervous, but it couldn’t linger there long. The moment she heard the click of success, she was on her feet, carefully circumventing her structure, running to give me a double high-five and a hug. She repeated this ritual each time she placed another block.

Couldn’t we all benefit from a little more celebration? Every block. Every mistake learned from. Every step forward. How much happier could we be if we approached the little moments with gratitude and joy? Judging by Grace’s approach, the rewards would overflow us. She shows me how to live a life enriched by struggles through undeterred perseverance and self-defined success. Dancing unabashedly as she sings her favorite songs, laughing at her own jokes, and building block structures that defy her mother’s boring ideas of how they should look. Grace finds happiness by being her true self, because she doesn’t know any other way. Adversity is programmed in her genes. And yet she persists, and succeeds, and celebrates the tiny victories we often take for granted.

So this WDSD, celebrate like Grace and so many others with Down syndrome do: rejoice in the small steps and simple joys, love people despite differences, spread happiness and high-fives, smother loved ones with hugs and kisses, and build your own story in your way, no matter what anyone else thinks or says about you.