Ben just had two really bad seizures, two days in a row. So it's getting worse, not better. I really thought the Lamictal had a chance of working...
I met a woman last night who has epilepsy - controlled by medication. I asked her to describe what it feels like to have a seizure. She said that the worst part happens right before the seizures starts. She knows when it's coming and can't stop it. And that it's just really scary - the feeling of losing consciousness. This must be what Ben is feeling because he cries out. His face is distorted in fear and then in a grimace induced by the seizure. During the worst part, he looks at me, crying out, and I just wish I could stop it somehow. But I don't know how to stop it. I've tried music, rocking, blowing in his face, flashing lights, firm massage, pressure points recommended by his acupuncturist, anything I can think of to stop his brain from seizing. Nothing works.
The seizures go on for 20 minutes. That's 20 excruciating minutes where Ben is in distress, crying and seizing, and flailing as if to get away from his seizing brain. It's just awful. Unbearable. I don't expect Ben to deal in any other way than he does. I do expect myself to deal with it in a better way than I do. I need to find a way to stay composed and to recover so that I can be a good parent to both of my kids for the rest of the day. I want with all my might to check out - to go away, or to take Attivan, to drink, if I had pot to smoke it - anything not to experience what I experience. But that is all unacceptable. So, for now, I sit here, unable to stop thinking about how awful this is, and wanting to jump out of my skin.
I suppose that is acceptable for now. But not for long. Not for another year. Initially I gave myself a year to recover, to find ways of dealing that are helpful, to find acceptance. A year has not been long enough. But another year? I will not bear it.
3 comments:
Hi Catherine - you are a strong woman to be honest with yourself and the rest of your world. I'm so sorry you have to see your baby in seizures. The only way to the other side is through, even though it does seem unbearable. I'm thinking of you and Ben and Chloe and Aaron, wishing you peace and love from far away. Suzanne
I love you all so much and am thinking of you all the time. Wish there was something I could do to help. xoxoxoxoFarah
In the throes of my own stresses over the last couple of years, I read something that helped me. I'm paraphrasing here, but it was something like, The Buddha says (and I'm not Buddhist) that all discontent comes from wanting something different than "what is", and there's no point in wanting something different than "what is".
Initially I was a little annoyed and frustrated by that idea. Eventually I came to see the simple truth of it. I also realized that it didn't promote me or my kids when I was fighting "what is/was", in fact fighting it was a distraction from whatever it was I needed to do or be.
Granted, my issues didn't involve the anguish that comes with helplessly watching my child seize, but Catherine, I've also come to realize that our children teach us about weaknesses we never knew we had. We struggle and then eventually overcome our weaknesses because there really aren't any other alternatives. And we always grow in the ways we need to as though we're given these customized lessons by the universe for some reason.
Hang in there! You're in my thoughts! Trust yourself! Hugs, Cathy
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