Staring at the screen...

I've been staring at the screen for the last two hours, wondering how to start this blog....wondering how to put into words the anger, the fear, the trepidation I've been filled with since last night.


Last night, I had to call an ambulance because my daughter had her first tonic clonic seizure in three years.  It was short, lasting no longer than 7 minutes from start to finish.  It was unexpected.  I stupidly thought that because she hadn't had a seizure since the med change two weeks ago, we were smooth sailing.  Clearly I was mistaken.  We spent a few hours in the ER.  We did a med levels check, and some more blood work.  Everything came back normal.  We were sent home, and I spent the better part of my morning on the phone with the neurologist.  He's putting her on Carbatrol, which is just an extended release version of the medication that she's already on.  I've alerted her school, and they've already updated her seizure plan, and they're holding a special meeting on "what to do if...." on Monday afternoon. (I love that place.)

When it comes to what needs to be done after a seizure, I've done all that I can.  I called the right people.  Updated what needed to be updated.  Logged what needed to be logged.  I've been the responsible parent.

I feel gutted though.  My heart is breaking, and I am terrified.  There's a panic involved with being a parent and not being able to physically battle the thing that is hurting your child.  The feeling that fills you when you look at your child's face, and you recognize that she's having a seizure...its something that I can't describe.  I'm pretty good in an emergency, but I will admit that I lost my cool for about five seconds last night.  The thoughts and feelings were flying through me so quickly that I barely had time to register them.  I clearly remember starting to cry, and saying, "No, no, no...oh, please no..." But then I got it together.  The tears hadn't even had a chance to really form.  My baby needed me, and I had to get myself together.  By the time I had grabbed my phone and hit the emergency button, I had gotten it together, and I was calm.

The feeling for me after she has a seizure is one of embarking on a new journey, and knowing you're traveling through unkind territory.  It's a barren wasteland, and the points of hope and happiness are going to be few and far between.  There are going to be setbacks, and she's going to have more seizures.  There's going to be Video EEG's ran, and doctors' appointments.  There will be blood work, and med increases.  And in the end, we won't have any more answers than what we have right now.  She has epilepsy.  We don't know why.  End of story.  There's no light at the end of the tunnel here.  There's no hope for her being suddenly cured.  This is a lifelong condition, and what this seizure event has done is remind us of that.  Just when we began to hope for a normal life for her, we were reminded that she's always going to have this problem.  Always.