A Labor of Love: GiGi’s Playhouse Down Syndrome Achievement Center Coming to Northern New Jersey by Elena Croy, Writer/Editor + National Down Syndrome Society DS Ambassador

“What does it cost to invite, to welcome, to come to know someone, to accept them, to befriend, to need, to love?” -Erik Carter, Ph.D.

When life becomes optional, we learn to debate the pros and cons of sustaining it. We live in a capitalist society, with dwindling social services that currently coincide with increasing costs of living, so it’s no wonder that money becomes a major consideration when a family is discussing whether or not they can “afford” a baby with Down syndrome. Prenatally, this can result in termination; at birth, panic and dread; and during adoption, declining the placement altogether. But to treat life in terms of financial transactions is to deny what makes us human and what makes us beautiful.  

“No calculation can measure the worth of a life.” - “Forgive Us Our Trespasses” (2022)

Much like the autism community, the Down syndrome community is pressing for an evolution from “awareness” to “acceptance” during our respective advocacy months. While I don’t speak for every last family member of someone with Down syndrome, nor would I ever attempt to replace the voice of a self-advocate, suffice it to say that until we are done segregating students with Down syndrome away from their peers, until we prioritize meaningful employment for disabled adults, and until we fund the programs necessary to give pregnant mothers the confidence to bring their babies with DS into the world in the first place, our task of building awareness isn’t complete.

National Down Syndrome Society NYC Buddy Walk, September 2025

The first few weeks of Hope’s life were spent keeping her alive. Every week we were dealing with some new, terrible surprise—introduction of a new medication to her regimen that would ultimately not work, failure to thrive, and a blood disorder that would upend the immediacy of our plans for open heart surgery, which, if I remember that multi-page bill correctly, ended up costing around $1M. Her eighth through tenth weeks of life were especially fragile and culminated in a 105-degree fever that put her into the trauma ER, a short two months after we had broken her out of the NICU. We took up temporary residence at Columbia/Morgan Stanley Children’s Hospital of New York (CHONY), while an angel of a friend visited our apartment daily to care for our two cats.

Yet with these challenges and more, I wouldn’t change my daughter or her Down syndrome diagnosis for the world. 

Baby Hope witnessing falling leaves for the first time, Fall 2016

In the past, when I’d hear people say this, I thought it sounded bogus—that is, until I fell in love. I fell in love with this sweet baby girl, with all the best folds and mush a baby can have. I fell in love with the way her hazel eyes picked up the blue sky when I’d lie down in the grass and hold her over my head, or the evergreen behind her swing in the backyard that framed her glowing little face. I fell in love with how hard she worked, driven by instinct and challenged by disability. I fell in love with the way she communicated through signs and sounds. I fell in love with the way she preferred a bumpy ride in the car to a smooth one and how helpful this was in helping her nod off in the backseat during lengthy drives between medical appointments and therapy sessions.

When you love someone, you find a way, and when you find a way, you realize how much better it is to live life alongside that person. I know that our friends and family love Hope. I believe our church community loves Hope. I dream that by the time she graduates, our school will have loved Hope. We talk a lot about what we can gain from loving someone with Down syndrome, but is there also something we can give? 

A year ago, myself and another mom had reached a point where we were tired of wondering where our Down syndrome community was for our children. We have a robust WhatsApp thread and a network through Valley Hospital, side friendships and a few adaptive sports programs sprinkled around our area, but there is no hub, no single place we can go to play when we feel strong or to rest when we are ready to fold. So we have decided to build one. 

In a little over a year (fingers crossed!), we will have a brand new GiGi’s Playhouse Down Syndrome Achievement Center right here in northern New Jersey. GiGi’s Playhouse is a multi-national network that supports families with Down syndrome and related needs through the entire lifespan, from prenatal diagnosis through to young and older adults, and everyone in between. We are working with our neighbors and partnering with like-minded organizations in supporting a beloved, albeit under-resourced population. Little ones will have therapeutic music and movement programs. School-aged children will have tutoring and social opportunities. Teens and adults will have social, cooking, and physical enrichment, as well as opportunities for career development. And with the help of our community, families will not pay a dime. 

This Down Syndrome Awareness Month, I ask that we not only consider what we have to gain by supporting the Down syndrome community, but instead, with our abundant resources, what do we have to give? Time? Materials? Knowledge? Expertise? 

To help us celebrate this month, please take a moment to check out the following links for our startup, our labor of love, GiGi’s Playhouse North Jersey: 

• eNews: Stay connected with updates and opportunities.

• Volunteer interest form: Volunteers are the heart and soul of GiGi’s Playhouse. From the buildout of our physical location, to the day-to-day programming that makes GiGi’s Playhouse so special, we need you! Contractors, technicians, business owners, teachers, therapists, paraprofessionals, students, retirees—there is a place here for you.

• Socials: Teach your algorithm to love GiGi’s Playhouse North Jersey as much as we do! You can find us on Facebook, Instagram, and LinkedIn. 

• Website: The good old, reliable website. We’re still building out some of the pages, but most of our resources can be found here. 

Also, GiGi’s Playhouse North Jersey is hosting our first fundraiser at Moe’s Southwest Grill on Tuesday, October 28. How can you participate? Print this flyer, or present it digitally, for dine-in or takeout any time that day, and we will receive 25% to put directly toward our startup effort. 

Thank you so much for your love and support!! Happy Down Syndrome Awareness Month! 

From our family to yours, 

The Croys 

What am I reading? 

We have a recent Parkinson Disease diagnosis in our family, so I’ve thrown myself a bit into knowing and caring about Michael J. Fox and the Michael J. Fox Foundation for Parkinson’s Research. His new memoir, Future Boy: Back to the Future and My Journey Through the Space-Time Continuum, was just released last week. Via interviews, I’ve been amazed to learn that he spent the first seven years following his diagnosis reconciling in private in order to become the absolute force in PD research that we now know him to be. 

What am I listening to? 

Amy Julia Becker has a new podcast called “Take the Next Step,” which I quoted at the very beginning of this article. The episodes are shorter than those of her “Reimagining the Good Life with Amy Julia Becker,” which I still adore and is more faith-based in its approach to understanding the value and worth of people with disabilities. 

What am I watching?

I stumbled on “Forgive Us Our Trespasses," (2022) on Netflix, and I sort of wish I hadn’t, so I will guide you here with many warnings. The story is of a German boy in 1939 with an upper limb difference, caught up in Hitler’s raid called Atkion T4, which, according to the text at the end of the short, 10-minute film, “led to the murder of 300,000 disabled people, while sterilizing an additional 400,000.” This film includes hate language, gun violence, and abuse of children. This film is rated TV-14 and not suitable for young viewers. But if you can stand it, this film is also an incredibly powerful work of art. 

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.