There are moments when I completely overlook the fact that my son has Down syndrome. It’s easy to become absorbed in his typical two-year-old tantrums, his playful grin, and his unwavering determination. Liam is both obstinate and tender-hearted. When his older sister experiences one of her dramatic, “the sky is falling” meltdowns, he’s the first to rush over to comfort her. He often climbs onto my lap, extending his tiny fingers to gently touch my cheek, his sweet way of expressing love.
Of course, he also has a knack for chaos—opening drawers, tossing items onto the floor, and creating a whirlwind of disarray. When I confront him, he ducks his head, peering up at me with a mischievous smirk that says it all. Sometimes he helps tidy up, and other times he simply wanders off to find his next target for destruction. Music is his passion; the moment he hears a tune, he starts dancing. No matter how upset he might have been just a moment before, he can’t resist joining in on a round of “Itsy Bitsy Spider” or “Twinkle Twinkle.” He can turn anything into a musical moment, even moving to the rhythm of fireworks during Fourth of July celebrations.
Sometimes, I forget that Liam is simply Liam. When I look at him, I don’t see Down syndrome; I see my son, his sister’s brother, a delightful, spirited, and determined little boy.
However, I am reminded of his diagnosis in the most uncomfortable ways. Like the time at the grocery store when a cashier shot me a pitying glance and whispered, “I bet you wish you had known before he was born. There’s a test for that now…” I felt a rush of shock, anger, and hurt. In that moment, I could have reacted violently, but instead, I chose another path.
With a wild grin, I replied, “I know right?! It’s SO much harder to get rid of them once they’re here. Believe me, I’ve tried…” Her jaw dropped in disbelief. I leaned in closer and whispered back, “So, are you suggesting it’s acceptable to terminate a pregnancy but not to harm a child once they’re born? To me, there’s no difference. For the record, we knew everything about him while I was pregnant, and there’s no way I would ever let any harm come to either of my children, even during a time when they’re unjustly labeled as disposable.”
Sometimes I forget that not everyone sees Liam for who he truly is. Many people only see a “Down’s kid,” a burdened family, or a child destined to suffer. I’m jolted back to reality when I notice the pity in their eyes or overhear their ignorant comments.
I realize that their lack of understanding isn’t entirely their fault; they simply don’t know. They don’t grasp the weight of their words. They haven’t experienced Liam’s infectious giggle or the warmth of his smile. They haven’t witnessed the fierce protection his sister offers him, despite her claims of disliking “boy babies.” They haven’t cheered him on as he conquers new milestones, feeling the pride as parents do.
Sometimes, I forget that I was once in their shoes too. Before Liam, my knowledge of Down syndrome was limited to what I had read in nursing textbooks, enough to leave me in tears, imagining a future filled with challenges.
Sometimes we forget that to us, they’re just Liam, Mia, Ethan, or Zoe, and that’s exactly how it should be.
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Summary:
This article reflects on the author’s experiences as a parent of a child with Down syndrome, highlighting moments of joy, challenges, and the misconceptions faced from outsiders. It emphasizes the importance of seeing children as individuals rather than through the lens of their diagnoses, and it advocates for understanding and compassion.