I don’t know about your life, but one of the most common things that we talk about is yesterday. We are often updating therapist or just reliving fun stories and today was no different. As it turns out, yesterday was a pretty big day for us. First off, Tangled came out. So Chloe and I ventured all of the way to Target to get it and talked all day about how we had to wait for Claire Bear to watch it, it was a pretty big deal. Chloe really liked her Tangled themed coloring book, I assume because Rapunzel has wonderful hair and there is a horse. None the less, Chloe was excited about the movie. Claire had had a pretty rough day at school and fell asleep as we watched, she did see it three times in the theater. Pretty quickly Chloe opted to watch from the kitchen, only occasionally peeking out to actually look at the tv. We talked about how it was scary and that it was alright to hide. With Claire asleep on the couch and Chloe playfully dancing to one of the songs in the movie, I thought I might run into my room for a minute. I heard a sound, an unfamiliar, run too it as fast as you can sound. As soon as I turned the corner I saw Claire’s poor little body convulsing/ jerking. Her arms were in sync going up and down and she was foaming at the mouth. She stared out the window, there was no connection to the world that was around her and just as quickly as it happened, she was back asleep. I immediately called Fairy Mary and after talking I really do think this was her first honest seizure. After 25 minutes she slowly woke up, but her body did not. She was so floppy and jerky and Jared had to hold her in his lap and steady her head while I tried to get her a little dinner. We ended up having to lay her in her bed because it was the only safe place for her, heart wrenching really isn’t adequate, what Jared and I felt was something worse than that. I kept thinking about poor little Chloe as this went on, Claire required both of our attention and Chloe just got the scraps that night, it isn’t always like that, but I feel like it really should never be that way either. Claire slept it off and woke up to a new day. She was back to her normal self, she even opted for two layers of nail polish, first pink, then purple glitter, a true sign that nothing was out of the ordinary. Sara our ABA trainer was here (I would never put two coats of alone with them both!) and chatted with Chloe while the nail polish was drying. The discussion quickly turned to Rapunzel. Chloe said in the cutest, almost two year old tone, ‘it was scary’. While I admit it is scary, Disney does a great job of creating antagonist for a thrilling story line. But she saw Claire’s seizure. She saw Claire weep and scream as she struggled to control her body. Yet, that didn’t seem to evoke feeling of scared. She can walk up to Claire when she is screaming at 110%, give her a hug, tell her she loves her and then turn to me and announce that Claire is sad. So the word for yesterday will be scary, for Chloe it was the creepy evil lady in the movie, for me it is the mecp2.
4 thoughts on “Scary”
Colleen, I am so sorry that Claire had to experience her first seizure and I think you summed everything up beautifully, MECP2 is scary! I pray every night that 2011 is the year for our girls. No one should have to live life the way that they do. Siblings amaze me every day with what they just do and what is “normal” for them. Chloe is going to grow up be one amazing woman!
mecp2 is so evil.
im hopeful it was her first and LAST seizure. big hugs.
Evalyn has been experiencing staring spells. I must get them checked out. I do wonder what it would cause in our life if she were to start having bigger ones.
Thank you for sharing it with us. I like to see a bit down the road.
Scary sounds right 😦 I am so sorry. Rett syndrome is a very scary world. Big hugs for all of you