Every month, I get dozens of messages on Instagram from parents, grandparents, and caregivers who’ve just heard the words “agenesis of the corpus callosum (ACC)” for the first time. Some are moms still pregnant, scared about what’s ahead. Others are grandparents wanting to know what life might look like for their grandchild.
This is our story—not because it’s the only story, but because it’s ours. My daughter, Lillie, is seven, and she was born with ACC. Around here, we call it her “race car brain”—because it works differently, but it’s powerful, fast, and uniquely hers.
More Than a Diagnosis
It would be easy to tell you only about the struggles—about the meltdowns, the anxiety spirals, the processing delays, the fatigue that seeps into our family life. And yet, that in and of itself is the mild side when most people first hear “ACC” and Google the diagnosis. The internet is a grim place to find doctor advice and more often than not, parents see children that are on feeding tubes, cannot walk, blind, and many other things when they receive the diagnosis. It's a scary diagnosis of unknowns and a wide range of outcomes. It's a diagnosis of "wait and see" and not necessarily knowing what you are going to get in a year or ten years from now. We consider ourselves so blessed to have such a high functioning outcome in the midst of our story.
But here’s the truth: Lillie is not just her diagnosis. She is so much more.
Personality Bursting at the Seams
She is witty and sharp, often catching me off guard with her humor. She’s quick to make a joke, to find the funny in a moment, or to say something that leaves us belly-laughing when we least expect it.
She has style. Since the first hint of pumpkin spice at Starbucks, she’s been in coordinated Halloween outfits—orange bows, pumpkin leggings, ghost earrings. Fashion is her language, her way of saying to the world, I am here, and I am fabulous.
She has passions. She loves Taylor Swift, animals, painting, jewelry, and currently singing at the top of her lungs the Descendants soundtrack and K-pop Demon Hunters. She gets hooked on something and dives all in, singing, dancing, and dressing the part.
She has grit. She plays softball with determination, bikes with confidence, and crafts like her hands can’t keep up with the ideas in her brain. She’s physically strong and surprisingly athletic—catching balls, swimming independently, riding bikes, and running bases in ways that still leave us marveling.
Resilience in Action
Her race car brain works harder than most. She fights battles most people never see—trying to read the social cues in a noisy lunchroom, trying to keep up with a game when her processing speed is lagging, trying to hold her anxiety in check so she doesn’t fall apart in class.
And yet, every morning, she wakes up with a full pitcher and tries again. She steps into the world ready to give it another go. That resilience, that willingness to start fresh, is one of her greatest strengths.
What She Teaches Us
She teaches us patience—because slowing down for her pace shows us things we’d miss rushing by.
She teaches us humor—because laughter is often her way through.
She teaches us courage—because living openly with a brain that works differently takes guts.
And she teaches us joy—because even on the hardest days, her smile, her wit, and her determination shine brighter than the diagnosis.
A Different Kind of Magic
ACC isn’t easy. Some days are exhausting, messy, and heartbreaking. But it also brings unexpected gifts—like seeing the world through the lens of a little girl with a race car brain.
She is proof that a diagnosis does not define a life. That even when the highways in your brain are fewer, the detours can still lead somewhere beautiful.
She shines. Not in spite of her race car brain, but because of it.
If you’re new here because ACC has become part of your story, welcome. You’re not alone.
I’ve written more about our life with ACC—the joys, the struggles, and everything in between. You can find all of those posts here.
Because a race car brain doesn’t mean a broken brain—it means a different kind of magic. ✨
