I struggled with the title of this post for a while. My blogging process always takes me through a round of “Is it witty enough? Is the title catchy? Will people want to read this?”
And in this case, I wasn’t sure with the answers.
I just want to tell it like it is for us right now. And that can be summed up in one sentence. The seizures came back.
About 10 years ago, the teenager was diagnosed with epilepsy. One day he was a typical toddler and was playing on the couch and all of a sudden he fell over into a fury of convulsions.
Admist screams and cries for help, my husband and I called 9-1-1 and sat through the 2 minutes of horror that was that was his first seizure.
That day changed our lives forever. The following days were filled with more emergency room visits (because often they send you home and tell you to follow up with your pediatrician) and endless internet searches (I didn’t even know what epilepsy was.).
For the next 3 years, we dealt with the disease. It was hard. Very hard. It was unpredictable. Anti-seizure medicines don’t work right away and have a lot of side effects, including more seizures. We also had two other
children babies to take care of.
It’s hard for me to think about those years without being sad. Very sad.
Shortly after he turned 5, things changed. He had one seizure at school and that was it. We didn’t see seizures again.
For 8 years.
After two years, he stopped taking the medicine.
We watched carefully, but nothing came back.
When I spoke of epilepsy, I changed my words from, “We are at a really good place right now,” to “No seizures in ____ years!”
About five years ago, I even started working for the Epilepsy Foundation as an Education Coordinator so I could help others.
The kids volunteered at epilepsy awareness events. It was one of our causes.
But three weeks ago, the seizures came back.
And this time the rules are different. The seizures are different. The doctors are different. The schools are different. The sisters aren’t babies, but tweenagers who get easily freaked out by all of this. During all of this seizure stuff, I still have to remember my thyroid follow-up stuff. And the obvious….this time there is no husband to change his work schedule so someone could always be with child, or sit with me when I cry, or share theories and treatment options with at 2:00 a.m.
So that’s where we are.
That’s why I stopped systematically smiling in October. I was overwhelmed with the seizures themselves, and just the thought that they returned took me to a place.
I don’t know how little or frequent I’ll be talking about it here. The boy has asked me to start a blog specifically for his epilepsy, and his sisters have agreed to write it with me.
And November is Epilepsy Awareness Month…so I’m thinking I’ll write a little bit…at least.
Because some days are better than others, and on the bad days, I just may need to talk about it here.
Either way, I hope you’ll join me for the ride…:)