Friday, September 7, 2012

Purple Pumpkins!!

This Halloween I’m pondering doing purple Jack-O-Lanterns for our front porch. Of course, purple is the color for epilepsy awareness, and since, as the kids say, I’m about that life, I’m looking into painting a pumpkin purple. I think Liz and I will have a great time painting them and carving them. I’m excited about this little endeavor.




I’m wondering how to do this at a school level, and use them to spread epilepsy awareness. I’d love to sell little purple pumpkins to the students, but you know that wouldn’t end well. I’ve also thought about putting little purple pumpkins in the staff mailboxes, with a little note about epilepsy awareness month. The hope being that they’d keep them on their desks for kids to see. I’m going to keep pondering this. Hmmm….



In a weird twist of fate, I’ve been put on Zonegran to keep me from having headaches. If you’ll remember way back to Christmas 2010, you’ll remember that Zonegran was the medicine that Liz was on that made her develop kidney stones. I’m REALLY hoping that doesn’t happen to me. Fingers crossed. I’m honestly just hoping that my headaches improve to the point that I don’t have them. I’m already in such pain from the fibromyalgia, and I don’t need anything else on top of that.



Liz continues to do well, which is such a blessing. She’s living a normal 9 year old life, and I love that she gets to. 

Tuesday, September 4, 2012

Good News, And Yet, I'm Annoyed.

I really need to do better about blogging. It seems that I think of fifteen different topics to talk about, but by the time I get an opportunity to blog about it, I'm exhausted or preoccupied. I vow to do better.

So, the good news. Well, last week the kiddo had her bi-annual neurology check-up. It has been eighteen months since any seizure activity. The doctor wants to see her in February and do an EEG. He said that if it's normal, then after she starts her menstrual cycle, if she's still seizure-free, then we could start a timeline to ween her off her medication. I know there's a lot of if's to that statement. It's just...this has NEVER been a possibility. Ever. It was always understood that her seizures were severe enough that she'd always be medicated. Now there's a tiny possibility that she won't. There was much rejoicing at our house that night.

Now, why am I annoyed? I am acquainted with a number of families that have children with seizures. Recently, the daughter of one of these families came to me in tears. It seems that she's been experiencing seizures at school and kids are teasing her about them. I tried to help as much as I could. I told her that what she possesses inside her is more special than her seizures, and if they couldn't see her beautiful light, then just forget them. I don't know if it helped. I hope it did. It's just...where do people learn to be like that? How many times have I been at the store and been judged by those around me because my daughter is having a meltdown? How many times has she been called out for being different? Why is it culturally acceptable to make fun of people with special needs? Why is there still a stigma attached to these conditions?

The truth is that those that float the mainstream are missing out on one heck of a ride elsewhere.

You have to hang on to that light inside you, always. Don't let anyone ever take it from you because they've honestly not done anything to deserve it.