October: Rett Syndrome Awareness Month — Choosing Joy When the World Tells You Otherwise

 

Every October, my heart sits a little heavier. It’s Rett Syndrome Awareness Month and the month she was diagnosed, and as the parent of a daughter with Rett, I want to tell you all the things most people don’t know — or maybe can’t imagine.

When you have a baby, you dream. You imagine the first steps, the bike rides, the school dances, the friendships. You build a future in your head before they can even say your name. And then, one day, someone in a white coat looks at you and says words that shatter all those dreams. Rett Syndrome.
“Take her home and make her comfortable.”

You hear that and think it must be a mistake. Surely they don’t mean never. Never talk. Never walk. Never eat by mouth. Never ride a bike. Never sleep through the night. Never live independently. Never have a prom. Never get married.

Never. Never. Never.

You go home with a baby who looks perfectly healthy — but whose future has just changed in ways you can’t even begin to understand. You mourn the life you thought she’d have, and somehow, you mourn while she’s still right there, smiling at you. Still your baby. Still here.

But then… something happens.
You start seeing the world differently.

You find joy where most people would miss it — in the sparkle of a giggle, in the sound of a happy squeal, in the tiny victory of a relaxed hand. You realize that “never” doesn’t mean what they think it means. She does dance — in her father’s arms, with that grin that could power the sun. She does ride a bike — an adaptive one, with the wind in her hair and pride written all over her face. She does have friends — the kind who drop to their knees to play Dora when the prom lights are too bright, who see her, not the chair.

You learn to celebrate differently. To grieve differently. To live differently.

This life — the one that was supposed to break us — humbles us instead.
It strips away everything fake and shiny and shallow. It teaches us to see joy in the cracks, gratitude in the hardest places, love in its purest form.

Because every single morning, I’m greeted by the most beautiful smile — one that says I’m happy you’re here.
From someone who can’t walk, can’t talk, can’t eat, can’t sleep, and yet knows love more deeply than anyone I’ve ever met.

So, when October rolls around, I don’t just want people to know what Rett Syndrome takes. I want them to know what it gives.
Perspective. Humility. Strength.
And the kind of joy you only find when you stop chasing normal and start choosing love.

They told us it would be the hardest thing we’d ever do.
They were right.
But they forgot to tell us it would also be the most beautiful.