I've really put off writing this post here. I guess because it feels like I'm giving up on my child. I would like nothing better than to bury my head in the sand and say that everything is just fine and Taylor's seizures aren't quickly taking her away from us.
None of the medicines, not the VNS implant, and not the corpus callosotomy has taken away the seizures. The brain surgery did stop the drop seizures for about 4 years and for that I am eternally thankful. While the hundreds of absence & complex partial seizures she has continued to suffer from have not been great, they have actually been more of an annoyance than anything else.
All that is changing now. She has started having more and more drop seizures and some days, it's just too hard for her to function. We've watched her lose abilities and become unable to do some of the things she used to do. She can't carry her food/drink to the table any more for fear of dropping everything during a seizure.
We've been told that it's probably best that we try and plan "things" now as it will too hard when the time does come. I always thought her heart defect would eventually be what caused her the most life-threatening problem. No, it's going to be her brain. That part of Taylor that makes her the happy, loving, funny, silly person that she is will eventually be what takes her from us.
I realize that no one knows the future and Taylor could outlive me. I also know that the signs I'm seeing now tell me that I need to cherish every day I have with her, knowing that one day, in the near future, she could just slip away.
I'm torn between pestering the neurologists for something that will help and not filling up what could be a short time left here with tests, needles, and doctors.
Yeah, so that's where I am right now…torn between reality and denial. I think I like floating down that river better.