Hope and Henry under the Ridgewood Christmas tree, following Access Ridgewood's sensory-friendly tree lighting at Parisa East earlier this month.
The kids wake up early and tiptoe downstairs to see what Santa delivered while they were sound asleep. My son begins checking gift tags while my daughter plugs in the lights on the Christmas tree. Our sweet, gentle dog trots into the family room to check in on the commotion while my husband and I stir in our cozy bed, relishing in the sounds of our baby girl’s breathing coming from the bassinet a few feet away. Soon it will be time to make pancakes, light a fire in the fireplace, and open presents that were so thoughtfully placed beneath the tree.
This is a sort of unfair portrait of a scene I designed long before having children of my own, borne somewhere between my childhood and the elevated one I imagined for my kids. In some ways, much of this fantasy has come true, but not in the way I might have expected. (And for those who know me personally, no, there is no third baby! This is just my fantasy!)
So yes, in real life my kids wake up early, but in our house that’s between 3 and 5am, and at that time of morning there are no gentle stirs and most certainly no tiptoeing. My son is definitely the gift tag checker around here, but my daughter’s low muscle tone and safety skills are current barriers to her plugging in the lights on our tree, so it’s critical we get to the scene before she does. There is also no way our dog would gently trot into the family room—he’d trickle pee across the floor out of excitement and then start tearing up his toy chicken while my son squeals at a frequency that shifts both the dog and his sister into fits of mania. Our bed is in fact cozy, and if I beg hard enough my husband will probably make pancakes for everyone (I’ll settle for cinnamon buns), but only half of our family enjoys opening presents and I’ll give you a hint who that is: we’re both well into our adulthoods.
Every year I hope this will be the year that my daughter feels the magic of opening a present she dreamed of receiving. I remember Christmas when I was her age, opening a gift I had wished for so intently. This toy was in every catalog, featured on nearly every commercial break, and I can still sing the jingle for it: Barbie Golden Dream Motorhome. It was glorious. Gold-rimmed wheels, window shades that pulled up and down, a roof that swung out to make room for all of Barbie’s friends, and little gold utensils that I cared for like they were made of real gold, so tiny I could barely hold them myself when I set the table for Barbie and Ken. Oh, and don’t forget the golden candelabra that really brought the whole camp scene together.
But my daughter just isn’t built the same way as I was, and this has been an exquisite lesson in remembering what Christmas really means and living that lesson year after year. She does love giving—today I sent her to school with a bag of gifts for her enormous support team at school—and I’m certain she will light up as she passes these gifts out, one by one, her heart fueled by the gratitude reciprocated to her. But she will not ask for a present, expect a present, or delight in opening a present. Not yet anyway, and we’re nine years into this whole gift-giving thing.
Hope came to us nine years ago on Christmas Eve, and I don’t mean to put any sort of pressure on her as to what that means or doesn’t mean, but she has slowed us down in all the best ways a person can be slowed down. She makes us stop and think about how our energy affects others. She has taught us that what we do is more important than how we do it. She has taught us that the world is full of unique, interesting, very different people, who are often hidden by an unwelcoming society, not hiding from one as we may once have been taught.
Thank you for spending a little time with me here at Bergen County Moms each month and for being interested in our lived experience of raising children with disabilities. This past year has been chockful of excitement—often, but not always the good kind—and 2025 I have no doubt is going to surpass everything we were able to accomplish this year. I hope you will continue on this journey with us!
Cheers to you and the beautiful spirit you carry around each and every day. Wishing you a blessed holiday season! From our family to yours.
What am I watching?
Not often do we get to enjoy a movie with a character who has a disability without the movie being about the character’s disability. Just in time for the holiday season, we get this little gem of a film, A Christmas in New Hope. Actress Mia Armstrong, a 13-year-old girl with Down syndrome, plays the daughter of a single mom, and to know how the story unfolds, you’ll just have to watch it! The movie is streaming across multiple services.
What am I listening to this month?
The Lucky Few Podcast featured A Christmas in New Hope’s actress, Mia Armstrong, and writer/director, Julia Barnett, in episode 288. You’ll get to hear how Mia was cast and what the goal was in hiring a child actor with Down syndrome for the film.
Looking ahead, launching January 3rd is a new podcast I’m very excited about called The Diverg. Podcast. Promos can be found here.
What am I reading?
On our family’s quest for deep, meaningful inclusion, we find ourselves pulled to the past in order to understand why our present situation looks the way it does. I read a deeply moving memoir this year, Entwined: Sisters and Secrets in the Silent World of Artist Judith Scott, written by a woman named Joyce, who was tragically separated from her twin sister during a period when our culture and society promoted institutionalization of people born with intellectual and developmental disabilities. If the memoir seems a little heavy of an undertaking, a thoughtfully composed synopsis was created as a picture book, Unbound: The Life and Art of Judith Scott.
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.
Kommentare