I was going to write a hopeful post, an “it-will-be-okay” post, about how even though Neil had a seizure last week, and I discovered him postictal, face down in a huge pile of Lego, bleeding from several cuts on his forehead, nose, and neck, he told me the next day that he thought he understood what is meant by having an aura, the feelings or sensations one experiences immediately prior to having a seizure, that he was starting to recognize his, that it’s a “woozy” feeling. I was going to write a post that at least there was that, that maybe he could learn to use his aura, as some with epilepsy do, to circumvent the seizures, not just because they are scary to witness and he gets cuts on his face, but because, according to research, the more seizures the body has, the more the body gets used to having them, but also because they can be fatal, and that terrifies me. I was going to write that post and then just a few days later he had another seizure, a massive one I witnessed from the beginning, and as it was ending he stopped breathing a few times, and I should have called 911 but I felt paralyzed, focused on willing my son to breathe, telling him to, in his unconscious, agonized state, and he did and I collapsed in relief, shaking, shaking, too shell shocked to cry, not daring to wonder what if.
The next day I asked him if he had experienced the “woozy” aura and not surprisingly he said no. I know it takes a long time and lots of practice to develop it, but the fact is I don’t think he would have had a chance with a seizure like that, which is how all of his are. Grand. (Big.) Mal. (Bad.) And although I often try to be Zen-like about the seizures I find that I undeniably have PTSD and my heart involuntarily starts racing with terror every time his eyes roll or his hands stiffen or he makes an unintelligible vocalization and of course whenever I’m out of the room and I hear a thud or a series of thumps, and I curse the seizures, hate them hate them hate them, even though I’m all too familiar with the New Age tenet What you resist you draw to you, but how could I not resist them? How?
Ouch. Sorry. That must be very scary.
Sigh. You can’t. I have found it to be impossible, and I’ve been watching them for years and years and years. It never gets easier for me — except for when I sort of kind of dissociate while they’re happening and go through the motions like some kind of Stepford seizure wife.
I’m so sorry to hear of Neil’s struggles. I hope that you will find a medication or treatment to help him. And check out the book by Adrienne Richard (I think I told you about it) to help support Neil with traditional epilepsy treatment.
Oh, Tanya, I’m so sorry to hear that you and Neil have had to endure more seizures…I know it’s a horrible – helpless feeling to watch and will them to stop, and you have every right to hate them. 🙁 I’m praying that Neil’s doctors find some medication to help lessen the severity and occurance of them soon, and that peace is yours and Neil’s as you travel this rough terrain together. Hugs to you my friend! I love you guys and I’m always only a phone call away! XO
Impossible.
And of course you have PTSD, how could you not. Touch that with gentle awareness and give yourself a huge hug for how awesome you are.
love.
hugs to you and Neil Tanya…<3
These are some rough times for you, I’m so sorry! You’re very good at finding the positive and maintaining hope, so a post like this speaks volumes about the stress you’re under right now. I love you and I wish I could help you more. Let me know if there’s anything I can do.
Tanya. I am so sorry. It never feels okay to see our children suffer. How terrifying.
Hi Tanya,
That must be absolutely terrifying, you must go through a minor seizure yourself, I would be a bag of nerves myself.
I hope you find a good specialist, there is a solution out there.
Hugs, Paulene
oh SH*t Tanya!! Im so glad I popped over here and read this bc I had no idea! I can totally relate as my daughter at 16 still had uncontrolled, vicious grandmal seizures and I do understand about the PTSD-like reaction. I have experienced that myself!
I am so sorry you guys are going through this. its terrifying. I know you’ll find answers and I’ll be sending all my positive energy to you both :).