Category Archives: Hard Days

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,...

Deck the halls with broken femurs

“I have little bones” -Dolly Parton From our family to yours, a few ideas for holiday activities: Decorate cookies Ice skating Caroling Family game nights Watch your daughter suffer the most excruciating pain possible for a week before finding out she’s broken both femurs Ya you heard that right. Grace broke both femurs during a seizure...

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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