Oliver’s bedtime routine involves him drinking a bottle of milk, going upstairs with Mommy to sing the “Brush the Teeth” song and take care of oral hygiene, then a story or five, and shutting the lights off together. First the two lights by the stairs, next the bathroom light, then finally comes the light in Oliver’s room.
Now it used to be that Angela would put Oliver in his bed and rub him until he fell asleep. If things were taking awhile, I would come up and take over rubbing duty so Angela could start her own bedtime routine. If we try to sneak out before he is fully asleep, he cries. He doesn’t just cry though, he cries and screams his head off as if he is terrified. He doesn’t “cry himself out;” rather, the longer he cries, the more worked up he gets. If left to cry for 45 minutes to an hour, he can get to the point where he is physically ill. The last time we tried to let him “cry it out” it took me well over an hour to rock him to sleep. Even after he was asleep, he was still breathing in sobs. What I mean by this is that he couldn’t just breathe in a full breath; it kept getting stifled by his sobs. It took about an hour after this (even though he was completely asleep) for his breathing to even out and normalize.
I’m not exactly sure why Oliver gets so terrified. I don’t think it is the dark. I don’t think that he just doesn’t want to go to sleep. I think that maybe he just doesn’t want to be alone. Maybe he is afraid to be alone when the Seizure Brain hits. Seizure Brain is not a medical term, but just what I call his strange activity during the time he is falling asleep.
Almost without fail, this is what happens: Oliver is getting sleepy either because it is his bedtime and he is naturally tired and he has just had his warm milk and we are rubbing him, or because it has been one of those days where he is just revved up and we have given him melatonin (a p.r.n. medication used to help with the onset of sleep). Either way, what happens next is always the same. His eyes get heavy and his breathing starts to deepen. His muscles all start to relax and you can tell he is right on the verge of falling asleep. Just when I think he is about to enter dreamland, a funny thing happens… Seizure Brain happens. Oliver’s eyes fly open wide. He looks up, not at me, but past me at something only he can see. The corners of his mouth start to turn up into the start of a small smile. Then, his eyes meet mine and the smile intensifies. His face is now in a state of pure euphoria. Sometimes even, a high-pitched squeal laugh will squeak out. Other times, it is just the enormous grin. Now Oliver is fully awake again. Sometimes he wants to get up and play, but usually he is content enough to let me keep rubbing him, though now it will be at least another 30 minutes before he drifts off to dreamland.
It is important to note that this activity in and of itself is not a seizure, or at least I don’t believe it is. I think it is just his brain deciding to give him one last energizing jolt of awakeness. For what reason, I can’t begin to guess. I only know that this is a part of his everyday. This is Oliver. This is part of who he is, and it is something that we must accept, because there really isn’t anything that can be done about it.
Now in the evenings after he and Mommy turn off the lights, he walks down the stairs and cuddles with me on the couch. I hold him close and massage his head, gently tickle his arms and hands, and rub his back until he relaxes enough to drift off to sleep. I await the more-often-than-not Seizure Brain to occur. I smile back at him when he finds my eyes and he knows he is safe. He is with me and safe. Usually, I can get him into a relaxed state, and we start the dance with sleep anew.
Once he is fully asleep, I carry him off to his bed, turn his sound machine on gently crashing waves, and quietly shut the door. Now it is time for my nighttime routine. I usually do the rest of that night’s dishes and maybe clean a little while the television is on in the background. I check my facebook, and on very, VERY rare occasions, I write a blog entry.
I’m not telling this story for advice on parenting, or for pity, or anything like that. This is merely a glimpse through a tiny window into our lives. Of course, these are just my thoughts. This is what the glimpse looks like to me. You can read Angela’s on her blog if and when she chooses to update it.
Thanks for listening,