Category Archives: Hard Days

I’m not strong. I’m battle hardened.

I didn’t become “strong” because I wanted to; I became strong because I had to. A woman I admire on Instagram, Jamie Lee Finch, said something today that hit me in the feels. “I told my therapist this week that if I’m never called “strong” again for the rest of my life it will be...

Divorce in Rett syndrome families

Does having a kid with Rett syndrome increase the likelihood of divorce? I think I forget sometimes that there are readers here who are actually following our journey and care about our life with Grace and Rett syndrome. I can be guilty of only coming on here to share the really big stuff. But I’ve...

Stop shaming us for being too busy

To-do list this week: Follow up with insurance company re: diapers appeal Follow up with DME supplier re: feed deliveries Follow up with hospital re: negotiation of large hospital bill Try for a 3rd time to get info from disability charity about completing portions of the Medicaid waiver application which I don’t understand Take Grace...

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...

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