Sometimes, I lose sight of the fact that my son has Down syndrome. It’s easy to get caught up in his two-year-old tantrums, his cheeky grin, and his spirited nature. Lucas is both headstrong and incredibly sweet. When his big sister, Maya, is throwing a dramatic fit about something trivial, he’s always the first one to rush over and check on her. He loves to snuggle in your lap and gently caress your cheek with his tiny fingers, his way of saying “I love you.”
Of course, he also has his moments of chaos—opening drawers, scattering toys everywhere, and throwing things on the floor. When you call him out on it, he ducks his head, peeking up at you from beneath his eyebrows with a sheepish grin. Sometimes he helps clean up, but more often, he just wanders off to create more mischief. Lucas has an undeniable passion for music and will start dancing the moment he hears a tune. He simply cannot resist joining in on a round of “Itsy Bitsy Spider” or “Twinkle Twinkle,” even if he was upset just moments before. He can turn anything into a musical instrument, even dancing along to the fireworks on the Fourth of July.
In those moments, I sometimes forget that he has Down syndrome—he’s just Lucas to me. When I look at him, I don’t see a diagnosis; I see my son, Maya’s brother, an adorable, strong-willed, and remarkable little boy.
But then, reality hits, often in the form of an unkind reminder from a stranger. Like that cashier who gave me pitying looks and whispered, “I bet you wish you’d known before he was born. They have a test for that now…” A wave of shock, anger, and pain flooded through me, and for a brief moment, I entertained the idea of giving her a piece of my mind. However, instead of resorting to violence—because let’s be honest, orange is not my color—I opted for humor.
I flashed her a crazy smile and said, “Right? It’s SO much harder to get rid of them once they’re here. Trust me, I’ve tried…” Her jaw dropped, and I could see the shock in her expression. I leaned closer to the counter and whispered, “So it’s okay for me to end his life while he’s still inside me, but not once he’s born? For me, there’s no difference. And just so you know, we were fully aware of who he was during my pregnancy. I would never allow harm to come to either of my children, not when they’re considered ‘disposable.’
Sometimes I forget that when people look at Lucas, they see a “Downs kid” rather than a vibrant little boy. They might perceive us as burdened parents and a struggling sister. They might think he’s suffering or incapable in some way. I often forget this until I catch a glimpse of pity in their eyes or overhear their ignorant comments muttered just below their breath.
I also have to remind myself that it’s not entirely their fault; they simply don’t know. They haven’t experienced the joy of Lucas’s laughter or felt the warmth of his smile. They haven’t witnessed the fierce love his sister has for him, despite her claims that she doesn’t like “boy babies.” They’ve never cheered for him as he reaches new milestones, their hearts swelling with pride.
Sometimes, I forget that I used to be like them too. What I knew about Down syndrome before Lucas came along was limited to what I read in nursing textbooks, which only left me in tears, imagining an immobile, incapable child. I didn’t know.
We sometimes forget that to us, they are just Lucas, Ava, or Max—that’s how it should be.
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Summary: This heartfelt reflection on parenting a child with Down syndrome reveals the writer’s journey of love, acceptance, and the occasional hurtful encounter with others. While the world may sometimes see a diagnosis rather than a child, the author emphasizes that Lucas is much more than his condition—he’s a cherished son and brother full of joy and spirit.