Shhhh….
Sometimes I’m afraid to say things out loud. Afraid to write them. Afraid of thinking them. What will it mean if I say that it has been just over one year since my boy has had a seizure? Am I inviting trouble? Is it ok to celebrate or is it premature to feel relief?
Just before his last seizure my boy had gone 6 months without having one. We had felt so confident when he reached that first 6 month milestone. We were happy. We really thought the doctor that said his brain just needed to heal was right.
And then one night when we were happily over confident we–me and my old man–were asking our son to fall asleep so we could get on with watching a movie we thought might not be appropriate for his 9 year old ears, Borat. It seemed that our kid knew we were trying to keep something from hi and he was practically refusing to go to sleep. Getting restless. Talking to us from our room (where he slept for over a year since we were his only seizure monitors). “Go to bed son,” we kept repeating over and over. Finally quiet. Finally we didn’t have to worry about this completely inappropriate anti-semitic (did I mention my family is Jewish?) film being repeated to our kid’s 4th grade class. It was quiet. Almost. I didn’t hear it. My husband did. I’ll never know how he could hear it and what to listen for, but he got up and then said with urgency, “I think he’s having a seizure…”
In an emergency, and every seizure was to us an emergency, I cannot function. Cannot remember how a cordless phone works. Cannot dial 911. Cannot understand being put on hold by 911. But somehow manage to eventually have 911 dispatchers on both home and cell phones and get neighbors from across the street to help us know what to do next and cry to and make confession to.
The Confession. That was knowing that I was not going to be able to not tell someone–everyone–my husband–that I knew my son did not take one of his medications that morning. I thought I wouldn’t have to tell anyone because that night we were supposed to stop giving our son one of his meds. We had been lowering the dose for several days and this was to be the first night without it. But I knew that he did not take it that morning also. I gave my son his medications at 6am, but I had to pee really badly and said, “Here take these” and wandered off to pee. It wasn’t until much later that I was cleaning up and noticed that the pills were gone, but the liquid medication mixed with grape kool-aid to mask the taste was still in the cup. No biggie since that was to be the last dose anyway. No biggie if it hadn’t been for the glitch in our plans to watch a very funny movie that I had seen already. It was the first movie I had seen after. After. After my son was sick. And I had laughed. Laughed hard when I really needed it.
But not this night. This night I cried to my neighbor. I cried because I knew I had to say I forgot to make sure my kid took all of his meds. I cried that I thought this was over. I really did. I had gotten comfortable with the idea that my son was done having a brain that made me feel completely helpless. And I was wrong. And there he was moving uncontrollably. I missed the beginning. That was when he sometimes opened his eyes really wide and looked at me as if to say fearfully, “MOM! What’s happening?” right before he could say nothing and only jerk his hands, arms, head, and sometimes forget to breath. This night I just saw the jerking movements. This night he didn’t forget to breath in a way that might require CPR, but we had taken those classes before he had left the hospital, just in case. This night we still panicked, but probably didn’t need to, but that was our habit. The neighbors, the fire department, and the EMTs were all in our bedroom. They watched with us as our son “came to” and went through a very typical phase called the postictal phase–when the person that had a seizure has slurred speech, can’t walk a straight line, and is very sleepy. The slurred speech and difficulty walking took my head and my heart back to the hospital and back to a time when I didn’t know if my son was ever going to be the same again. He had come back to me, but I worried that this time might be different and this time my son would never speak the same again. He hadn’t started playing basketball at the same level as before he was sick, but what if this time he wouldn’t be able to even hold the ball again. All of this right after I was sure we were done with all of this.
Here we are now. We didn’t celebrate the second time our boy reached the 6 month milestone. We knew better. We’d done that and got fucked over. So this year thing. What do we do? Are we allowed to talk about it. We saw all these relatives recently and so many of them hadn’t seen us since before our kid was sick. So many people asked, “How is your boy?” One of my uncles let me know that he keeps a picture of my kids on his desk that was taken at the hospital. And when he and the others asked how he was I felt so odd saying what was the truth.
He is doing well. It has been a year since he had his last seizure.
He is doing well. It has been a year since he had his last seizure.
Oh, we did finish watching Borat the day after that last seizure. We got some sleep after a night in the ER and an IV full of Dilantin (for the kid, not me), then we debated about whether we should watch the rest of the movie. My boy said no because he thought the movie caused the seizure. I told him that if anti-semitic humor caused his seizures he could probably make the news or at least Entertainment Tonight.
