Category Archives: Diagnosis

Grief like an onion

Keep falling until you can’t fall no more Until you feel like you’ve been falling for way too long Then you will know ’bout me -fink I usually know what I’m about to write when I get to this blank screen. I have a number of posts that sit in my drafts. This has been...

What does hope really look like?

Pretty soon here, we’ll be hitting our 9 year D-Day anniversary. In the beginning, “hope” looked vastly different than it does now. A newly diagnosed mom recently wrote to me and said: “I haven’t read a single thing that has inspired me or given me confidence, as much as anything can with this ridiculous syndrome,...

Does it get easier?

“Does it get easier?” “No. You just get better at it.” -The Good Wife I spoke with a new Rett mum the other day. When Grace was first diagnosed, no one told me the things I needed to know. I was instantly sucked in by the charities and was only promised a cure, hit up...

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