Sunday, February 10, 2013

Isaac's Epilepsy

Parenting is hard. 

(Stop laughing, Dad, I can hear you.)

I remember an episode of Frasier where they were discussing the first time they realized their Dad was imperfect. Once you're a parent, you have to deal with the day you realize your child is not perfect. I'll never forget the first time I saw Isaac have a seizure. I'll never forget the traumatizing EEG he had to confirm my suspicions. I'll never forget Larry's face that drive home as he processed what I also had to process: our son is imperfect. It's hard to say the words. I typically tell people, if I tell them at all, that Isaac has absence seizures. It's too painful to say epilepsy. It's too real. Even typing it brings tears to my eyes. 

I can't believe it's been almost 2 years since we had the official diagnosis. It's been 2 years since I first saw the seizures. My baby was only 2 and he would stop suddenly, then keep walking. I would scream in his face, clap my hands by his ears. No response.

For almost 2 years we've been struggling with how to help him best. It doesn't seem fair that I should be in charge of this. I don't know anything about epilepsy. I don't know anything about seizure medication. His neurologist sees children with epilepsy every day. I do not. I need more help and all I have is the Internet for assistance. The problem is, no one has Isaac's situation. Even the neurologist told us she didn't think he had absence seizures because he was too young, but she would do the EEG anyway. Turns out my instinct was right. 

We tried natural remedies with no luck. So we had him on the medication. After being on the medication for over a year, he was still having seizures. So we're trying different remedies. We're trying a diet that has worked for some. If it doesn't work there's another diet we can try. We've also cut out TV and all electronics.

It's weird to think back. When Isaac was a baby I had this weird feeling about seizures. I wouldn't let him watch TV and I wouldn't play anything that had blinking lights. I had no reason to worry about that. I hadn't read anything to confirm those fears. I just... worried. And now I can't help but wonder if God was preparing me. If I had an instinct. 

It's hard. I just had to get it out. I haven't talked about this a lot. I don't like to talk about things I don't know about and I definitely don't know what I'm doing in this situation. I have no advice. I have no idea if I'm doing the right thing. And it's incredibly, incredibly hard. 

But this is where we are. I guess I ask for prayers. Prayers for wisdom as his parents. Prayers for healing for Isaac. 

Prayers for answers. 

1 comment:

Katie said...

Girl you have my prayers for sure! tell me a little more if you dont mind. when you say he would just stop walking then start again did he or does he have the "normal" shaking that comes with them? or did he just seem to stair into nothingness and snap out of it soon after? if you dont mind me asking.....