in rettrospect, I could see that grace was different

Grace was born in 2008. When we look back, even on those very early months, we can see Rett there pretty much from the beginning. Mostly in her hands. In her very docile nature. In those comments from friends about what a quiet baby she was.


Also present from the beginning were questions. "What's wrong with Grace?" We would shut them down. "Wrong? Nothing! She's unique! She's just very chilled out. She'll learn to (insert milestone here) whenever she's ready!" I hear many parents say they knew. They knew before anyone else could see it. But not me. I didn't see it. Maybe I didn't want to. But the facts escaped me entirely. The fact that she never bore weight on her feet the way babies do when you stand them on your knee. The fact that she never learned to sit up. To roll over. She could feebly feed herself until she couldn't. She could grab her feet. Until she couldn't.

And then one day it hit me. I could suddenly see it.

My almost-one-year-old who couldn't sit up. How did I never notice this? How did I just put it down to her being lazy all those months? I took her straight to the doctor. I said "look" and I put her on the floor. She flopped onto her side. And we just sat there looking at her. "Yea...that's not normal" he said.


6 weeks later, I told the specialist that she had Rett syndrome. And after "how did you figure that out?" he said "oh,'re right." That was December 16th, 2009. And now, nearly a decade later, everything everyone promised us about how some day we'd be experts is true. Other promises aren't so true (like there would be a cure in 5 years).


If your kid is newly diagnosed and you're here looking for advice, for hope, for a laugh...I hope you find it. Many of my posts are pissy. It can be so easy for me to glide through the happy times silently and then using blogging as a way to process the harder times. Most of the happy things are posted in passing to Grace's Instagram or Facebook page. The more complicated events get blog posts here on her website.


We're happy you're here!