Today, I sit here at my computer as rain soaks the whole grey world outside, watching Facebook for likes to my most recent blog post and watching the numbers on my WordPress stats rise. Wow, I’ve just been read in Ireland. And Romania. Technology is amazing. I have time for social media stalking on this soggy morning because the young woman who I usually study geometry with at this time of day, my daughter Haylie, is sound asleep on the couch with our beloved four-legged furry on guard next to her.
She is sleeping off a seizure hangover.
When I wrote the introduction to my book, nearly four years ago now (read it here), I wrote that Haylie was seizure-free. That was the truth. At that time, she had not had a seizure for more than six years and I had almost completely forgotten about the last one that she had had. To think of it still gives me shivers.
She was about eleven years old at the time. It was early in the morning, and I awoke from a strange dream that Haylie was being slowly covered with water. I could hear the steady echoing trickle of it filling whatever strange dream-vessel she was floating in. But then, she began to sink and her face was becoming completely covered, air bubbles escaping out of her nose. I rose right up out of bed and instinctively went straight into her room to check on her, only to find her in the midst of a seizure. She was facing the wall, her hands and arms clenched up tight to her chest, face pulled tight into a grimace as she rocked violently in her bed with rhythmic muscular contractions.
I knew what to do. I grabbed a reflex mask and pulled it over her head, putting it into place over her nose and drooling mouth, first giving a quick wipe with the pillow case to her sticky wet face which was puddled up in her own saliva. At this point, her breathing was so shallow that the mask didn’t move at all. But within a few seconds, it began to fill with her own exhaled carbon dioxide that she would now re-breathe, causing the blood vessels in her brain to dilate and receive more blood supply, carrying much-needed oxygen and nutrients. Within a few more seconds, the violent seizing stopped and she became flaccid and restless. Long arms and legs flailing about, long dark hair framing a face that was now relaxed and beginning to mumble. After a few more masks, her breathing became full and deep and her color returned from pale to pink.
I needed to continue the masking regime to fully bring her back to her normal self, but first I had to pee. Knowing that she wasn’t in any danger, I left her there wriggling in her pink floral sheets, breathing more deeply now, neurons coming back online slowly and surely. From my seat on the toilet, I could see across the hall into her room, and I could see her beginning to stir even more, trying to get up into a sitting position.
As I realized, it being first thing in the morning after all, and I am very regular, that I had to do more than pee, I called out to her, “Haylie, just lie still. Stay right there, honey.” She kept up the fight against gravity, however, and got herself upright in the bed. As my bowels began to move I was seriously caught between one kind of emergency and another. I mean what could I do? She was getting up and I could not, not just yet.
“Haylie,” I called out, sounding comforting at first but my voice getting sterner now, “you stay right there. Do not get up. Stay put.” My pleas turned into commands as I tried to finish on the toilet, and I looked up to see her struggling to stand up and take a first wobbly step. After a seizure, it always took a while for all the neurons in her cortex to connect properly again, and her speech and mobility, being cortical functions after all, were the most affected.
“Oh no no no no no, honey! Oh no just stay right there!” Her balance was unsteady. She stumbled like a bad drunk, first forward and then a little sideways, throwing her arms up for balance, but they weren’t taking orders so well from her cortex right now either. Oh shit. Literally.
Just as I was done and grabbed my pajama bottoms up so I wouldn’t trip and fall, I dashed for her as she was getting close to the doorway of her bedroom on rubber legs, teetering this way and that, teasing gravity with her long lanky, growing body. I was too late. It happened all too fast and in slow motion at the same time. Gravity won. She fell like the leaning tower of Pisa straight over into the doorjamb, hands coming up to her rescue a couple of beats too late. She smashed face-first into the trim, her forehead making a sickening thwuck as it met with the unyielding wood. Down she went, still no help from the hands, into an awkward linear lump onto the floor, just as I reached her.
So, that went down in my memory as “the last seizure she ever had.” I never actually thought that I would ever tell another single living soul that story. It’s simultaneously hilarious and horrifying. Mostly horrifying. The image of her smashing face-first into the wall haunted me for a long time. I had big time Mom Guilt for that one. Luckily, aside from a pretty good knot on her forehead, she was not seriously injured. Some people do get hurt when they have seizures, but that is something that I never really had to worry about. You see, Haylie’s seizures always happened in her sleep – either as she fell asleep or as she emerged from it. That has always been the case for her. Every single time, without exception.
Back in the early days, her seizures were strange and hard to identify. We even sat in a pediatrician’s office one morning with little toddler Haylie non-responsive on my lap, her head turning eerily too far to one side, eyes at such an angle that they almost disappeared into her head, tongue making a repeated smacking sound. The doctor did not know what to make of it. She wasn’t even sure if it was a seizure. This was the leading epilepsy specialist in these parts at the time. Her solution was to increase Haylie’s medications and add a new one. Little did I know at the time that it was the cortical-suppressing nature of these drugs that actually made the seizures so bizarre and long-lasting.
Once Haylie was under the care of The Institutes for the Achievement of Human Potential, and we finally got her weaned off of all of the anticonvulsant medications, her seizures became much bigger and more effective, and therefore much shorter and much less frequent. You see, a seizure is a life-saving mechanism designed by nature to accomplish something very important to the brain – acquiring enough oxygen for cell survival. You’re going to hear a lot more about this from me in posts to come.
In the meantime, suffice it to say that I am no longer afraid of my daughter having a seizure. I understand what is at the root of them and she understands how to live in such a way that makes them unnecessary and, therefore, very unlikely.
But, this morning was a rare exception. I walked past her room after she had just gotten up and noticed that she was wrestling with a pair of pajama pants. She was putting them on over top of her pajama pants. Yep. It was like her normal morning dressing routine but with a kooky twist.
I poked my head in the doorway and chirped, “Whatcha doin?” She looked up at me like I had three eyeballs and had just asked the most ridiculous question she had ever heard.
Her glare replied, “What does it look like I’m doing, you idiot?” but when she opened her mouth what came out was like, “Whur whor wa wa ba ma suh,” in that all-Haylie seriousness.
Oh my. I went in closer to get a better look, or listen, or something.
“Honey, why are you putting on more pajamas? Over your pajamas?”
Again, she shot me the “mind your own business, mom” look but again she murmured something completely unintelligible.
Yikes, I thought. This is so weird. That is exactly what she sounds like when she’s postictal (just after a seizure).
Oh my! She is postictal. She must have just had a seizure before she woke up!
She gave me a serious “why-are-you-so stupid” look when I handed her the reflex mask but, with only minor incoherent grumbling, she took it from me and put it on without much trouble and reached for the timer on her cell phone, which she did struggle with. She was setting the alarm instead of the stopwatch and was pissy that it wasn’t doing what it should. So, I took over and sat with her through the seizure masking protocol we had learned from IAHP. Within a few minutes she was back to her old self and could remember what day it was, understood the timer, her speech was clear and coherent, and her mood was much improved. Suddenly, I was no longer such an asshole but a comrade again.
As is typical when a seizure happens in the morning, she lasted long enough to eat some breakfast, but soon enough the headache, nausea, and lethargy became too much and in no time she was back on the sofa, falling asleep. Seizures come and go very quickly for her these days, if they come at all (which is related to her hormone cycle, nutrition, exercise, sleep, and stress), but they do still leave her with what we lovingly refer to as a “hangover.” She slept for most of the day and was very quiet and introverted when she was up, preferring solitude and no focused activities whatsoever.
Tomorrow I expect her to be back to her normal bouncy self, ready and raring to go on geometry first thing in the morning. It’s funny, you know I used to be able to predict when she would have a seizure. I could feel them coming in her behavior and, like thunderstorms, in the fall of the barometric pressure. But not today. It was a total surprise, which makes me realize just how much she has matured neurologically.
And, having been on constant alert, I almost always heard them. But again, not today. That makes me realize how much things have changed for me as a mom. These last several years we are far more like roommates than parent/child. She is an adult, after all. In many ways, she takes good care of me now.
Anyway, regarding the seizures, when I heard a bump in the night a couple of years ago and went in to find Haylie on the floor, wedged between her bed and desk, in the midst of a grand mal, I realized that my toilet panic morning, lo those many years ago, was not the last seizure I had ever seen. Dammit. And so, I stopped writing for a while. I thought that without that victory of her being forever-more seizure-free, that I didn’t have a story to tell.
Maybe I should just keep quiet.
But no, now I don’t think so. Now more than ever, I feel it is important to put our story out there. To tell people how she manages to be healthy and happy and successful and mostly seizure-free without being medicated. Neither of us is afraid enough of a seizure to want her to go back on those horrible medications with their insidious side-effects. You see, it’s hard to be afraid of something that you understand. Seizures sure can look scary, but they are simply a message from the brain. The brain is doing its best to get what it needs and if we want to eliminate seizures, then we need to eliminate the brain’s need for them. It really is that simple. It all goes back to treating the cause.
But now, before I get too carried away with this, you might be wondering, “So, how did all this happen?” and I promise to finish telling you. Remember, Haylie came down with spinal meningitis at just twelve days old and was rushed away to Riley Children’s Hospital in the middle of the night to try and save her life…
I began this blog to share pieces of the book I'm writing about my daughter's courageous march down the path from brain injury to wellness. It's the story of how one little girl overcame the odds, a long list of labels, and limiting diagnoses. I hope it inspires other parents to dream bigger by knowing what is possible.