Posts tagged CURE
Hunting hope

Life with a chronic incurable illness is hard AF. Societal standards tell us to downplay our struggles for a variety of reasons, to focus on the good. Somedays that's just not possible. Recently we've found ourselves in a rut with Adelaide's care and honestly, I'm just really tired. When there is no light at the end of the tunnel how do you hunt down hope? 

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Epilepsy sucks

Well, folks, its epilepsy awareness month so you know that means: you get to listen to me talk about epilepsy even more than I already do (is that possible?) AND our family is busy AF. In years past we have done a large fundraising campaign called #MyShotAtEpilepsy but I’m gonna be honest, this year we were tired and Adelaide has not been very stable… so we decided to be a part of at least one event a week because THAT would be less exhausting (sarcasm)… I digress.

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Desperation is a funny thing

It’s been a week, folks. One, crazy, exciting, heart-warming, bittersweet and frustrating week. Sunday, we celebrated Adelaide’s birthday among friends, family and caregivers. Sunday evening we were inspired by artists who happen to have epilepsy at The Kant Institute’s “1:26 Art in Epilepsy” art show where Miguel and I were honored for our work in the epilepsy community. Monday night was CURE’s 20th anniversary benefit and it was a night to remember where over 2.3 million dollars was raised for epilepsy research. Wednesday was Miss A’s actual birthday and by noon we were in the ER after she had four back-to-back seizures that morning.

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