The Seizures Came Back

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…:)

 

3 thoughts on “The Seizures Came Back

  1. Julie says:

    Oh, Toni! My heart goes out to you. Really. I well remember your struggles the first time around, and I pray right now that while they are back, they will be different–less potent and increasingly diminishing. We have had some rearing of the ugly head with asthma–know you remember that particular fun. I know EXACTLY what 3am inward panic feels like, and I hope you never have to do that again. God is with you always, and while He may not speak in ways that are immediately available, as Chris did, you are NEVER alone. Praying for you, girl.

  2. Angelia says:

    Toni, I’ve been MIA for a while and have to get caught up on your blog posts. This one just made me very sad. I know how it feels to feel as if you are alone whilst your child(ren) are sick. Jordan had febrile seizures for the first two or three years of his life. I cannot fathom what you are going through. We are literally 18 minutes from Cedar Hill. Please don’t hesitate to call on us at 2 a.m. or 12 p.m., for an ear, a shoulder, a screaming buddy or for a stiff drink. Kristopher and I think you and your kiddos are sweet as can be, and we are hoping to do a much better job of nurturing our friendship. Call us if you need a break or need me to sit with the girls or your son or bring over dinner or run an errand. I mean it! Hugs, Angelia

  3. Howard Hosea Payne says:

    You have been through much over the past decade, and I can only imagine what this could be like. The blogging does a lot for the rest of us to understand (as much as we can) your struggle. The more people that know and try to understand the better. Thank you for sharing a part of your life that some would keep secret. I think you are doing the right thing…Howard Hosea Payne

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