I don’t know how you do it.
I’ve never met a parent raising a disabled child who has not been told this at least once. For many of us, we hear it regularly, as if the tricky situations we find ourselves in are somehow optional.
When our daughter had open heart surgery—I don’t know how you did that.
When our daughter was abused by her preschool teacher—I don’t know how you got through that.
When we tore down the barriers that segregated our daughter from academic and social inclusion among her peers—I don’t know how you managed that.
Have you ever loved someone? Of course you have, and because you have, you know that love moves mountains. There’s nothing that love can’t overcome, in its own way, in its own time. Love gets pretty creative, forging paths where no solution has otherwise been apparent. Love is its own miracle.
As a community of moms raising children with Down syndrome, we learn very early on that our sons and daughters are not the problem they’ve been made out to be; rather, our society has evolved in a way that forces people with disabilities to its fringes. One hundred years ago, and through the 1970s, we were involuntarily sterilizing people with disabilities (and minority races/ethnicities/religions) in order to shape an ideal population around what were considered desirable traits and characteristics for the time. Fifty years ago, we were taking babies from their mothers’ arms and placing them in inhumane state institutions by the misguidance of medical professionals and loved ones. And today, for every one person you see living in New Jersey with Down syndrome, another one was terminated before birth.
We knew prenatally that our daughter had Down syndrome, and I was so fearful that I would not be the right mom for her when she was born. But in a dream I had when I was entering my third trimester, she took my hand and spoke to me in a sweet, articulate little voice I have yet to hear through her developmental delays nearly eight years into her life. She told me she was okay and happy, not in pain, and would be ready to meet me soon. I still remember this dream as if it were a lived memory.
Instead of asking how we raise children with Down syndrome, I wish someone would ask how we as parents of disabled children get through the discrimination, the bias, the negligence, the fear, the intolerance, the othering. I don’t know how you do it—I, too, don’t know how we deal day in and day out with trying to convince our neighbors and leaders that our children’s lives are worth living, their rights worth defending, their hearts and souls worth nurturing, their minds and curiosities worth feeding.
We don’t have to like everyone we meet, but we do owe them a chance. We owe people with Down syndrome the right to access the best health care providers and interventions, to learn and play among their nondisabled peers, to find employment in satisfying careers that pay at least minimum wage, to get married without losing their social security benefits, and to experience dignified living through every stage of life. In 2023, self-advocates, families, and organizations are working tirelessly to make these basic needs a reality.
The thing to understand about Down syndrome is that each person is different and unique from the next. There is no single way to understand the gifts each person has to offer without getting to know each person individually. As the saying goes, “If you’ve met one person with Down syndrome, you’ve met one person with Down syndrome.”
There is so much we can do collectively, this Down Syndrome Awareness Month and beyond. Thank you for understanding how tired we get sometimes trying to convince people of our loved ones’ worth. Thank you for the birthday party invitations. Thank you for accommodating our children’s needs during community activities. Thank you for your kindness, your patience, and your understanding.
The following are resources to access for yourself and family members of all ages. Please note, these lists are a great starting point but are by no means comprehensive.
We Play for Ray – Fundraiser in honor of Raymond Ranft
Don Bosco Prep at DePaul Catholic
Friday, October 27, 2023 @7PM
(check local listings for any game schedule changes)
Books for Caregivers:
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.