My children have epilepsy. One of them doesn’t like me to talk about it (but he’s fine and there are no updates anyway, hallelujah), and the other one, well, she’s fine too. But there are still updates. Because we have reached the magical milestone of two years on medication with no seizure activity. This is awesomely exciting, and slightly terrifying. Because the plan has always been to put her on the medication, wait two years, take her off the medication, see if she has grown out of it, and if not then we put her back on the medication, wait another two years, and repeat as needed.
I don’t at all want to downplay the enormous joy that comes with a two-year mark of epileptic freedom. But suddenly we find ourselves in the “see if she has grown out of it” phase of the plan. Meaning we have started decreasing the medication. Meaning we don’t know if she has grown out of it. Meaning we could be back to where we started two years ago, with ambulances and terror and the whole package. Meaning the nightmares are back and I’m not getting a lot of sleep.
It’s hard to explain exactly how it feels to have a great stress and worry lifted from your life, other than to say that it is gradual, and one day you just wake up, look around, and realize that it is gone. It’s a little bit like getting old. I often wake up in the morning assuming that I am 20, and then I look in the mirror and am quickly dissuaded. I don’t know when I stopped worrying about my daughter so intensely, when I gave up checking her breathing in the middle of the night, when I stopped watching her like a hawk for any sign of an eye flutter, but it happened somehow. Over the past two years that constant weight bearing down on me was lifted and I barely noticed it leaving. But it’s back.
Boy, I may not have noticed it when it left, but I sure notice it now. And it’s not as bad as it was. This time I have hope. I do not feel the despair I once did, as we tried medication after medication with little to no effect. I have a great desire and belief that she probably has grown out of it. I will watch her closely, but a part of me cannot even consider that she will have another episode, possibly because I just can’t bear the thought of going back to the way things were. I hope I don’t miss anything simply because I am trying to convince myself that it didn’t happen.
Overall, things are good. Moving in a positive direction even. And this important anniversary needs to be celebrated. But the fear also needs to be acknowledged. The pain moves below the surface, but it is not gone. It lies there, waiting for its moment to bubble back up again. I hope and I pray that, as we decrease the medication down to nothing, we discover that this chapter in our lives is over and we can move on. But even if they tell me that she’s totally grown out of it and we see nothing for the next thirty years, there will always be a small part of me, waiting, watching, preparing for the other shoe to drop.