Can’t sleep

I can’t sleep, I’m tired and I know we have a big busy day tomorrow but I can’t turn my brain off. I’e held it together better than everyone else until this point and now all the fear and anxiety that I should have been dealing with for the last two weeks is hitting me now. I’m sitting by myself in the 3rd floor common area of Easter Seals house, alone in the dark. I know every single other person in this place is here with a sick kid and it’s making me think about all the things that might be causing Princess’s seizures. She has started getting strong headaches along with sever photosensitivity and that scares me too. On solstice when we welcomed the new sun and choose something to leave behind from the previous year she put her head down and whispered “seizure activity”. Yesterday she told me with tears in her eyes that she just wants to be like everyone else, just plain old Princess again and it breaks my heart to see her hurting like this both physically and emotionally.I want there to be a simple answer to what is happening in her little brain, something simple and fixable. When we started this journey almost exactly a year ago we were told that the chances were good that she would start medication and never have another seizure again, kids with absence seizures usually grow out of them, Ethosuximide is an amazing drug and after 6 months or a year it will be fine. Why the hell couldn’t the doctors and nurses been right? Why now have we gone from a few generalized petite mal seizures a week to several a day to hundreds a day to drop attacks, jerks, apparent simple and complex partials and tonic seizures, vomiting every day, weight loss she can’t afford, constant sleepiness and headaches that make her scream and clutch her head like it’s going to explode? I’m so scared something is going to show up on the MRI, I’m scared that there is going to be a more sinister underlying cause to all of this and I’m scared that like my mother’s cousin tey may never find a reason and in turn never find an effective treatment. I’m trying to be brave because Princess is being so brave but I’m so scared I want to scream and cry and curl into a little ball and cover my head and pretend that none of this ever happened. No wonder sleep escapes me.


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