Waiting can be tough whether you are simply waiting on your coffee to brew, waiting on news about a new job, or waiting to for the mailman to deliver that certain package. For me today the waiting was in a form of a call from the school. You see Brooklyn has started having a ton of seizures and they are not our usual one and done, they are clusters – seizures that come one after another after another and I absolutely hate them. She has had these three days in a row this week but this morning she woke up early and was ready to start her day – she WANTED to go to school, she wanted to see her friends, she wanted to not hang out with me I assume;) SO – I had to let her go. I had to HOPE the seizures would stay away. I dropped her off and asked to be called the moment a seizure started. I am trying NOT to let these seizures dictate every aspect of our life, but it is hard. Rett Syndrome is hard.
So, I dropped her off and waited. I waited to see the school’s phone number pop up on my phone.
She went to school the entire morning (she is currently doing a half day of school) and she had a good <SEIZURE FREE> morning. Ahhhhhh – THANK YOU LORD.
Because the only thing worse that waiting for that call is waiting for a seizure to end. Unless you have experienced a child having a seizure, I do not think you can fully grasp the helplessness of that moment. I am her mom – I am supposed to help, I am supposed to stop it, I am supposed to protect her and keep her safe and I can’t – in those minutes during a seizure when I swear it feels like time is standing still all you can do is WAIT and it sucks.
Now we are home, I still find myself waiting…for the seizure to hit. They started at 3:04 yesterday. Will they again today? Or will they, just maybe, leave her alone today.
So, maybe, as it turns out, these seizures MIGHT be dictating our lives right now….and yes, I hate it.