Advocating for advocacy, pt 1

Happy week 2 of epilepsy awareness month! Earlier this week three members of the Cervantes fam traveled West to participate in Epilepsy Awareness Day at Disneyland.After Adelaide’s week in the hospital and increased breathing challenges, putting her on an airplane just didn’t make sense. So, we made the painfully difficult decision to leave Adelaide at home.

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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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Are you mom?

I never wanted to be a stay-at-home mom. Not as a little girl playing with dolls and certainly not as a 20-something finding my way. Up until Adelaide was diagnosed with epilepsy and Miguel booked Hamilton, I was our family’s primary bread winner and I loved it. In fact, I was out with co-workers, celebrating my last day at one job and about to take a new step in my career, when Miguel called to tell me that he had booked Hamilton and we were moving to Chicago. Exciting? Yes! Moment of panic as I realize my entire life is changing? Hell yes!

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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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Happy birthday, Adelaide!

Next Wednesday, October 17th, Miss Adelaide Grace will turn 3. Her birthdays have always been bittersweet: While we are thrilled that she has spent another year with us, (and goodness knows I LOVE planning a party), we are reminded that another year has gone by and she is still struggling and seizing. I mean, I’m pretty aware of this on a day to day basis, but birthdays are a forced reckoning.

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