Seizures returned tonight.
Emily had gone over 3 weeks with no seizures, just lots of spasms.
It was nice. Nice to not have to count seizure after seemingly endless seizure.
I got to get out of the house for a day, I almost put my guard down. Almost.....
I watch Emily like a hawk. Every movement every twitch and eye flicker. I watch other people kids for seizures. I look at kids in the grocery store afraid one of the will have one.
It sucks. Their is no other way around it. It's not fair.
It's not fair to watch her not develop with other babies her age. It's not fair that she slept through her birthday party because she could not process all of the noise. It's not fair that I have to sacrifice any sleep I might get to watch her because the seizures have screwed up her sleep cycle and during the day she has therapy 3 days/week. Today , even with a nurse, I got woke up 3 times with phone calls for appts, testing, insurance.......
It's not fair that people have removed themselves from our lives. I have very little family support. Those who do help us financially and emotionally we are incredibly grateful for and they know who they are. Our church has been a HUGE source of help, honestly we would have lost everything without them.
Others are just too busy with their own lives. I get it but it is still just not fair.
I am not good. If you ask and I say yes I am lying. Things are ok, I am just ok. Most day are good enough and we do get by. Some days are easier than others. Days like today not so much. One day I will be good. I know I will, just not today.
I know to some I sound like an whiney ungrateful brat but this is how I feel. My emotions are raw and I am just being honest. Things tonight are not ok.
Tomorrow is a new day blah blah blah I know but right now I can't stop crying. I hurt for Emily. I hurt for me and Joe.
45 seiuzres in and I am praying they will stop soon.
I debated posting this. It was very theraptic typing it all out. Maybe it will give someone else the nerve to be honest with themselves too.