These photos were taken one month apart, before and after Adelaide's infantile spasms diagnosis. I’ll never forget sitting on the bed in my Air BnB, hearing the doctor utter the words “infantile spasms” for the first time through the phone. I was in Chicago, 800 miles away from my family in New Jersey, tasked with finding our families new home as we prepped to move halfway across the country for Hamilton. I’ll never forget walking into Adelaide’s hospital room having arrived straight from Newark airport and seeing a shadow of the daughter I had left behind. I’ll never forget the month we spent in the hospital trying to gain control of her chaotic brain waves. Today is the last day of Epilepsy Awareness Month and tomorrow kicks off Infantile Spasms Awareness Week. I don't discuss IS often, as we prefer to focus on epilepsy as a whole, but today I dive deep. 

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.

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.