As I turned the calendar page to September tonight, I yelled out to Jasen, "No seizures at all in August!" I took out a blue marker and wrote "No seizures" on Lilli's seizure calendar that I keep on the fridge next to our regular calendar. I keep track of them for many reasons. It is important information when we are trying to figure out what could be setting them off or if we need to make changes in medicine, etc.
I am rejoicing because it has been over a year since she has gone this long without having a seizure. She has had some months with only a few, and other months with several each week. I thought about the odd practice we have of "waiting" for the next seizure. It is difficult to explain. Lilli has had them all of her life, and we always have to be prepared. We go by patterns and signs for when we think we should be "ready" for her to have a seizure. Some people can tell when they are going to have one. Lilli might be able to tell but she can't communicate that. We are always going on hunches and clues, like how she is acting, or things that happened that day that might bring on a seizure. Maybe it is a little like predicting the weather without all the fancy meteorology equipment.
One night in May I was "waiting for a seizure" and I felt like writing about it. I took a flashlight and a notebook, and wrote as I lay next to Lilli, who was sleeping, in the dark. This is what I wrote.
May 15, 2011
It is a Sunday night. Lilli has had a seizure every Sunday for the past five Sundays in a row. Jasen is out at the kitchen table doing schoolwork. He got Lilli to sleep, but now I am watching her in case she has a seizure. She sleeps in our bedroom, hooked up to a machine called a pulse oximeter to monitor changes in her pulse and oxygen saturation. Sometimes the alarm goes off if there are changes and she is starting to have a seizure. But sometimes… it doesn't. So although it is helpful, it is not as good as old-fashioned mom and dad. We listen to hear the sound of her smacking her lips. That is how we know a seizure is starting. This sound does wake us up every time. We are well trained, after seven years. We are also light sleepers.
When Lilli has a seizure, we fly into action. The light goes on, one of us runs for the Diastat (emergency medication) and the phone in case we need to call 911. I time the seizure while we get the medicine ready. I have not had to call 911 since December, a 10 minute seizure. There was a time years ago when the seizures would not stop at all. We have been to the emergency room a lot with Lilli over the past seven years.
Fortunately they have been stopping after several minutes for the past few months. Lilli has most of her seizures while she is sleeping. It makes our nights, well, not very restful, most of the time.
The chances of her having one tonight are pretty high, for several reasons. Even though it is late and I'm lying here in the dark near her, I cannot sleep. I think of all the things I could be doing right now instead of waiting for something to happen that might not happen. Re-folding all the laundry that Josh threw on the living room floor right before bedtime. Reading one of the many books I have stacked by my bedside that I would love to read but never get to. Is this healthy? I wonder. I already KNOW it's not "normal." But don't get me started on that word. Is this what firefighters or EMS feel like when they are on call? Waiting. Waiting for something bad that might happen, to happen. And making sure to be ready, in case it does.
One time I asked my husband if he thought it was accurate to describe waiting for her seizures like this: it's like sitting at the dinner table eating with your family, and you know that someone is going to choke on their food in the next twenty minutes. You sit there and try to enjoy your food, but really you can't because you are visualizing the Heimlich Maneuver in your mind, and making sure your chair is in a good position so you can get there fast when you leap up to help. You concentrate on watching your loved one chew food and swallow; relieved after each bite goes down. You can't pay full attention to the other family members at the table because you have to be ready for the second when the choking occurs. And you feel like this every time you have a meal.
When I told this scenario to Jasen, he slowly nodded, and said, "Yeah, actually, that is kind of what it feels like."
I look at Josh on the video baby monitor and see that he has no blanket. I go out into the kitchen quickly to ask Jasen something, then sneak into Josh and Chloe's room to cover up Josh. When I tip toe back into our room, I hear a sound and stop dead in my tracks. For a second I think it is Lilli smacking her lips, having a seizure. I stop breathing and listen with alarm. Then I realize: it's only the clock ticking in our bathroom. I just shake my head to myself, and climb back into bed for yet another long night.