>> Tuesday, July 28, 2009
Every night, before he drifts to sleep, I say a prayer. I say to the heavens: Please let him have a good night. Please let him not have a seizure. I offer my soul, I offer whatever I can offer to make this happen. I plead and I beg. I would give anything required of me to make him whole. To help him be at peace. As he falls to sleep, I pause whatever I am doing, and I watch him. I watch his barrel chest rise and fall peacefully, I watch his large hands relaxed and closed.
Lately, I watch his arm go above his head and his leg stiffen and I know that my pleading has done nothing. My words have fallen silent in the space between all things known and unknown. They have not been heard. Do not pretend that this is meant to be, it isn't. This sweet little boy is not SUPPOSED to tighten up and turn blue, he not supposed to grasp at me pleading: please make it stop. This thing, is an anomaly. It happens to almost 8 million Americans, but it is NOT SUPPOSED TO. It is not his, mine or your test of our character, test of our faith. THIS is not how one tests faith.
When he seizes, I roll him on his side and I wrap my arms around him. I can not help it. He is my heart and I have to let him feel some kind of protection.
Last night, as he seized, I grasped his head and kissed it and I begged: Please don't do this to him again, please no. Taylor was there and she came over and placed her tiny hand on his back and said: You'll be OK Bug. I tried not to cry but I did a little. I kissed his head again and held him tightly and he began to relax. I told Taylor: he's coming out of it. Then, after his whole body relaxed and he began to breathe normally again, he wanted to stand up.
This part is so painful. He wanted to stand, but he couldn't. His frustration got the better of him and he became combatant. It hurts to see, and it hurts to try to contain him. But I held onto him and I told him he needs to be calm, it will be OK, he needs to wait a few more minutes. He eventually fell back down and cuddled with me, he put his hands on my cheeks and kissed me. He was swallowing hard, rapidly. It sounds like he is choking but he isn't, it's a reflex reaction, his seizures cause it. After a few minutes, he was swallowing normally and his eyes began to blink longer and longer and they didn't open as widely. Gently, he fell back to sleep in my arms. I held him tightly and smelt his little boy smell, his smell that should be dirt and sweat and outdoor smells. But he smells like grape. His medication is flavored. I kissed his head and held his hand and I knew that there was a 50/50 chance of another very soon. So I waited, holding him, feeling every little twitch, every breath and I found myself expecting what came next, it was no surprise.
15 minutes after the first, he had another Grand Mal. Just as bad as the first. So, I gave him the Diastat.
It's a simple statement, easy to dismiss. I gave him the Diastat. Let me rephrase it before I detail it: I rectally administered the Valium. When a person seizes, you can not put anything in their mouths. Most often, once they are done, you still can not put anything in their mouths. You have a couple choices: vein, nose, rectum. There is a nasal anti-seizure medication but he will not inhale it. What I mean is, as soon as anything is up his nose he tries to get it out. Even when he is almost asleep. It's a crap shoot to get his Nasonex into the nose and not the eye. They do not prescribe shots so we get the syringe and administer it.
You may ask, why are you telling me this? It's simple, most people have no experience with seizures and what they do know is uncomplicated and they brush it aside since it doesn't happen to them or while they are around. So I want people, who would normally NOT think about it, to read this and actually think about it.
If you look at the picture, you will see a silver packet to the left. This is lubricant. One grabs the Diastat syringe, tears off the top of the silver packet, takes the cap off the syringe, dips it into the packet, makes sure it is well lubricated, just to be polite, and then inserts the syringe rectally and pushes the plunger to inject the medication. A few minutes later, the victim, I mean, the patient, hopefully drifts off to sleep. In a perfect world, that is. In my world, he clenches as soon as I go near his fanny, and then he rolls onto his back. He does not get the Diastat because he won't stop seizing, he gets it because he won't wake up long enough to stop them. He sleeps, and seizes, then sleeps and seizes. So he is somewhat coherent, most times, when he gets it. He just doesn't care. I have been, occasionally, swatted at but usually, when he really needs it, he doesn't move at all. Last night, he didn't move at all.
Once the violation was complete, I laid back down next to him. He rolled facing me and smiled. Only my boy smiles after such an event, the seizure and the medication. He sat up and looked around for a bit, then laid down and went to sleep. I didn't worry too much after that. Diastat usually gives us a day or two seizure free. Not this time. This time he woke me up a little after 7AM having another seizure. Another first. A bad first as far as I am concerned. At 7:25AM he was awake for the day. He was smiling and happy. I was not. Or at least, when he wasn't smiling at me I wasn't. I can't help but grin when he smiles at me. It's infectious.
All my pleading, to the heavens, to Bug, all of it, went unheard. If not unheard, ignored. And ignored is worse than anything.