186 minutes

Emma didn't sleep last night. She slept all afternoon until 9:30 pm tonight. In between getting Noah ready for bed, making sure clothes are laid out, getting myself showered, my hair washedand fucking dried ( I loathe drying and then smoothing out my hair-- it is a damn process, let me tell you.), and then fixing a little late supper for Emma, getting her in the shower, helping her condition and rinse her hair, help her adjust the water temperature, help her put her towel around her, lotion her dry face, give her a few kisses, pick up dog poop... twice, well, in between doing all of that (which is what 5 out of 7 nights are like for us, by the way!), I spent 186 minutes total working on a 4 page letter in regards to a meeting I'd like to have at school about Emma's Individualized Education Plan. This is IN ADDITION to the mandatory end of year Review meeting we will have.

Why do I do this? Because my daughter is important to me. Her education is a priority. And accommodations are a RIGHT, not a privilege. In order for her to get the best education she can, accommodations are necessary. I fight for her every year to get what she needs.

Why do I wait until we are in the middle of chaos in the evening to start on this? Pfffft. Seriously? I'll tell you something. Emma slept and Noah played on his computer for a while this afternoon. I have MOUNTAINS of shit to do. I rarely sit down. If I am not at work, I am working at home. You know what I did while they were quiet? I sat on my lovely sofa. I watched episodes of New Girl I'd not seen. It was wonderful. And in the darkness of the evening, into the night, simply put, words pour out of me. My scattered, foggy brain becomes organized, if just for a few hours. The words play in my mind, shoot down my arms, rip out of my fingertips, and speed across the keyboard. I read them as they whiz across my screen, and I AM CONTENT. I like words. A Lot.

I do this because my son goes to school, is a chatty kid, absorbs everything like a sponge, does his work-- he does pretty great overall. Emma goes, and she is instantly overwhelmed. She has some meltdowns, she complains, she is fatigued. She comes homes and sleeps. And sleeps. Sometimes she sleeps until the next morning. If she DOES wake up, it is about 9 or 10 at night, and I don't get to go to sleep when I would like to. Because she is my child, and I need to take care of her. I don't sleep well anymore. Gone are the nights where she slept like a log all night long. Now I am up at all hours, if not for the dang dog, then because I know she is awake-- I can FEEL her awakeness in the house. Our nights are always too short, the days too short, and we are incredibly tired.

It was the seizures making her tired for so long. Now, the seizures are NOT gone with the medication she's on -- just reduced. And the medication makes her tired. I imagine we will be upping her sodium soon to see if that helps... or switching the medication again. I am fearful of all these medicines. The first one made her weep all day and lash out in anger at me. I was sad for her. I am afraid of what these medicines may do to her body.

I know she is now able to focus longer during the day though and think more clearly. Those are good things.

I better go kiss her goodnight and cross my fingers that she goes back to sleep. I need sleep, too.