I was going to write a hopeful post, an “it-will-be-okay” post, about how even though Nigel 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. Big. 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?