Together Against Loneliness: Happy World Down Syndrome Day! By Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

I didn’t want a child with Down syndrome. I needed a child with Down syndrome. And now that I have a child with Down syndrome, there will never again be a day without light or edges of my heart not brimming with love. 

The mom I thought I’d be was one who took my daughter to get our nails done on a regular basis. I thought I’d be sitting in packed auditoriums for her dance recitals and helping her do things I couldn’t, like ice skate or learn a second language. I saw all of my imaginary future kids (for the record, there were four) loving hiking, joining us on climbs all over the world. 

These weren’t bad plans, but they were shortsighted. Hope and I don’t get our nails done, not yet anyway, but we share mother-daughter moments on the sofa, under a shared blanket, watching “Frozen: The Hit Broadway Musical” on Disney+. Hope isn’t on stage performing a choreographed dance with a dozen or two other girls, but she is sharing her gifts in front of an audience on the runway at Ridgewood’s Access Fashion Show each fall, at showcases with her music therapist from Music for Life Creative Arts Therapy, and in front of our church congregation at St. Elizabeth’s while singing in the children’s choir once a month. And we might not be climbing mountains anytime soon, but we are finding joy in nature when we head into the woods with Outdoor Play Connection and our friends at DIVERG. 

On a hike with Outdoor Play Connection x DIVERG., October 2025.

I’m not sure when it happened, but I can say confidently that I am officially on “the other side” of parenting a child with Down syndrome. The other side of knowing. The other side of understanding. A mystery unshrouded. The experience thousands of people before us have lived but struggled to articulate, or articulated just fine and it was me who was unable to hear the message. 

Being on the other side means seeing and feeling a deeper purpose every single day. On the other side, the mountains are higher and the valleys are lower. My body is very tired from the ups and downs, but my heart is rooted deeply and I’m on this ride with the most incredible little girl I ever could have asked for…or not asked for! 

Hope’s third grade class at Willard Elementary School surprised us by learning about the Rock Your Socks campaign, which was originally conceived as a talking point for people interested in knowing more about Down syndrome. 

Every year on March 21st, people around the world unite to celebrate World Down Syndrome Day. The calendar date honors the three copies of the 21st chromosome that cause Down syndrome, but the events honor the individuals and those who love and support them.

This year’s theme is “Together Against Loneliness,” and GiGi’s Playhouse North Jersey is hosting an event on 3/21 to bring families from across northern New Jersey together for an afternoon of joy and community. 

Northern Valley Sports Academy, 100 Oakland Ave, Closter, NJ 07624

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When GiGi’s Playhouse North Jersey opens its doors, we will be joining a network of over 60 Playhouses around the U.S., with two in Mexico, and a virtual program that supports families in over 80 countries. Educational, therapeutic, and career training programs for individuals with Down syndrome and related disabilities and their families will be offered for FREE to people of all ages.

Join us on our journey against loneliness. How? You could sponsor a program. You could make an in-kind donation for our brick-and-mortar location, or reach out to a business that might be able to help fill a need. Donate. Attend our events. Volunteer your time. Forward this post to a friend, family member, or colleague. Share your “why” and stay in touch on socials. We don’t exist without community, and that community includes you. 

Happy World Down Syndrome Day! Not just from my family to yours, but on behalf of each one of us who is working tirelessly to bring GiGi’s Playhouse to North Jersey. 

GiGi’s Playhouse North Jersey startup team pictured at a Kendra Scott fundraiser at the Garden State Plaza, Paramus, earlier this year. (L to R: Lauren, Allison, Paulina, Lori, Christina, Elena. Not pictured: Matt.)

What am I reading? 

We are wrapping up “To Be Made Well: An Invitation to Wholeness, Healing and Hope” by Amy Julia Becker at St. Elizabeth’s Moms Group. I’ve been intentional about reading the book slowly, practicing the exercises, and reflecting on what “healing” means and how to attain it. Or at least how to try! I highly recommend this book, for a book group or for anyone who wants to learn to connect mind, body, and spirit. 

What am I watching? 

For those with children in special education, we’re deep into IEP season, so it’s a great time to revisit “Forget Me Not: Inclusion in the Classroom” and all of the work we have to do as a society to stop asking children to conform to their classrooms, and instead build classrooms that bend and shift to their students. 

What am I listening to? 

See, this is where the list gets long. Other than “Open Book with Jenna,” my favorite podcasts aren’t keeping up with my consumption rate, so I’m expanding to one-offs, as well as others I should be listening to more often, such as “AASR Live” (The Alliance Against Seclusion and Restraint). 

Elena Croy with Hope + Henry | At Her Own Pace

Elena Croy is an ordinary mom learning life’s lessons from her two extraordinary children. She and her husband are raising their little girl, who has Down syndrome, and their son, who was born with upper limb differences, in Ridgewood. Elena chronicles their challenges, triumphs, and goofiness at AtHerOwnPace.com. Elena is proud to serve as a grassroots Down syndrome advocate for the National Down Syndrome Society.