This morning, as I lay in bed waiting for my son to wake up, I was pulled suddenly back into a nightmare that almost stopped my heart. From a deep sleep, his whole body suddenly went rigid with a bed-shaking jerk that almost caused him to fall off the side of the bed. A huge, gasping intake of air sounded out as his eyes flew open and stayed there, staring into space.
“Edward?!” I said loudly, springing into action over his body, ready to begin our dance all over again.
“Good morning Daddy,” he said, rolling over and sitting up.
It was not a seizure. He was just waking up. Stuff like that happens. If you ever want to be terrified, watch over someone with epilepsy while they sleep. Did you know that tons of epileptic stuff happens to you while you sleep, and it is perfectly normal? Think about a dog having a dream and watching its leg twitch. If that happened while the dog was awake, you’d have a problem. But sleeping? Totally fine! We all have experienced the odd twitch or shiver or shake as we drift off to sleep. Our eyes are supposed to flutter while we dream. Our brain is off doing all sorts of clandestine stuff while our body is indisposed. As long as it doesn’t do it when we are awake, what’s the big deal?
But then, how can I tell what is good and what is bad? When he is waking, what is normal and what is abnormal? What is a seizure and what is twitching and jerking? I tell you, it really puts one on edge. There is an article by Allison Ray Benavides in which she compares parenting an epileptic child to having PTSD, only without the “P” part. This is the most accurate description that I have seen yet. She asks, in her post, to continue the discussion. So here I am. Let’s discuss.
Every moment of every day, I am like a panther, coiled and ready to spring. Every noise I hear makes me think my child is having a seizure. Even when he is not here! When he is at school and I hear the dog make a weird noise, my heart skips a beat. We he was in the hospital and I was taking my turn to stay at home at nights with Ruby, I still woke up all the time, thinking I needed to rush in and help him. But unlike combat veterans, struggling to adjust to the fact that they are no longer in combat, I still am in combat. Every. Single. Day.
There are better times and there are worse times, but it doesn’t go away. Ruby got seizure control three years ago, and we still look for the signs constantly. It has gotten to the point where she has asked us to stop staring at her all the time. Well, sorry, we can’t. It’s impossible. We love you too much. And we are too scared.
For us, the hardest times are the transitions between awake and asleep. Not only are those the times when we’ve seen the most actual seizure activity, but they are also the times when we see the most mimicked seizure activity. Today marks day 19 of no seizures, our longest stretch since May, unless he had one this morning, which I don’t think he did. So this is good news. And yet it does little to ease my inner tension. It doesn’t feel real. It’s hard to wake up from a nightmare when the waking is the scariest part.
But we’re fine. Not really. But we are. Or we will get there. I hope. Thanks for listening. It helps. Now if only I could sleep…