From Then to Now: The Long, Winding Road with Rett

From Then to Now: The Long, Winding Road with Rett On my last post—the one I pulled over from Abby's old blog—she was 7. And I was… well, not. 😂 She’s now 20, and I am even older. Mind yer business. It would take me three lifetimes and an industrial-sized pot of coffee to list everything we’ve been through since then, but let me just say this: it’s been a lot. Abby has had a full spinal fusion. She’s lost her ability to walk. She’s had nine other orthopedic surgeries. (Yes, nine. And yes, I’ve earned every single one of these eye bags.) And even though she still has her spells—what we used to call Rett Episodes or tremors—she now also has full-on grand mal seizures. Because apparently Rett decided we weren’t tired enough yet. When Abby was two and all of us parents with same-age kiddos were first finding each other on MySpace (yes, MySpace) and then Facebook, I remember how much hope we had. A supposed cure was announced just four months after Abby’s diagnosis—within 2 to 5 years, they said. We clung to that. Back then, us young Rett parents talked about how hard and maybe even jaded the older parents seemed. They weren’t into the constant advocacy or the fundraising pushes. It wasn’t that they were hateful—they weren’t. They just… didn’t have the fire for it anymore. They just wanted to live their lives with their kids. I didn’t get it then. God, I get it now.