I’ve started and stopped a post about what our life in quarantine over the past six weeks has been like, which until Wednesday had been going rather well, all things considered. Then it all fell down, not the past six weeks but the past nineteen months.
Yesterday I watched an Epilepsy webcast featuring a local Mom whose child lives with a rare form of Epilepsy hosted by a Mom who lost her child after battling Epilepsy for nearly four years I felt an immense sense of guilt, our life has been hard, but not to the extent of some of things both of these women and their families have faced. I also felt grateful for the past nineteen months of seizure freedom, no idea that later it would be taken away.
As a parent of child with Epilepsy, you know a seizure could happen at any given moment, but you hope and pray that it won’t, only it does and it did. It was a hard fought battle to get those nineteen months. It took trial and error of many anti-epileptic drugs over many years, the Ketogenic Diet and perseverance. Prior to this Reagan had never in her eight years of life been nineteen months seizure free. We had a few honeymoon periods over the years but they ended as quickly as they began. Her documented seizures started when she was just sixteen months old (she was likely having them for months prior). She wasn’t ever having seizures daily, she’s not diagnosed with a rare form of Epilepsy, she is not on a G-tube, she is able to walk and talk and attend a typical elementary school, but she will never outgrow Epilepsy or Cerebral Palsy for that matter (this is a fact, so please don’t come back at me and say have faith, you never know, I know, the doctors know, that’s it).
It sucks. It sucks to have a child living with two medical diagnoses both of which have no cure and not one in sight. Its sucks that yesterday was day one and we start all over again. It sucks that she knew the seizure was coming and to watch her aura of terror before the full blown seizure ensued. It sucks that my first thought was what if we need to get her to a hospital, nowhere is safe. It all sucks, no matter the circumstances of the diagnosis, Epilepsy is a beast. The taker of time, turning moments once filled with childhood joy into fear, anger and frustration.
Reagan is resilient, she always has been. She is still tired but enjoying spending the day in pajamas (I mean isn’t everyone these days), coloring, watching movies, doing a little school work and receiving well wishes from her classmates. Last night I fixed myself a drink, celebrated the past nineteen months but cursed and cried a bit too. It all fell down, it has before and it may again. We are still standing, hoping we wake up tomorrow to day three.
Rea of Hope 