The word epilepsy has been one of the only words in my brain lately. When I go to sleep it’s: epilepsy. When I wake up it’s: epilepsy. For weeks this word has been rolling around my mind as something that seemed harmless (ridiculous even) one moment and a dark body of water surrounding me the next.
Since Luca’s seizure a few weeks back things have seemed to move entirely too slowly. I wanted doctors appointments like yesterday, waiting a day or two days seemed absurd. Who has grand mal seizures? (actually the correct term is tonic-clonic these days). Well, according to everyone everywhere a lot of people do. Everyone knows someone who had a friend who had a kid who had a seizure. It happens, it’s common. It was a fluke. This probably was too. I tried to hold that close because, like I said, it’s happened to somebody everybody knows. But still. I have had my phone in hand for weeks. And because it could be nothing it seems they don’t exactly rush it. Or maybe they do but you need tests and a neurologist. Call backs and referrals. Because it definitely could be something too. I feel like I have been on a train that goes 200 mph for 5 minutes then stops for 3 days in the middle of nowhere.
We did finally move to step one last week and had he a sleep deprived EEG. And let me tell you staying up nearly all night is just as difficult as it sounds. That would have been a good time for me to be a 20-something mom again. But with our few measly hours of sleep we made it and they did their thing with wires and strobe lights and pins wheels.
My Tiger held still while he was awake and fell fast asleep when he was asked to close his eyes. He looked as normal as ever. Except he looked like a robot with all those wire sticking out of his hair (and for him this was considered to be quite a positive thing). And I sat there and I watched. Like a hawk. Trying to play dumb to the tech like I didn’t google this shit for 6 hours the night before. I played aloof and watched all those lines. Pretending to scroll on my phone. Uniform lines suddenly changed to what it might look like if you took your pen in your fist and scratched the paper from top to bottom a hundred times. That doesn’t look right. The tech said he couldn’t say anything, but afterward he walked me over to pediatric neurology to make sure we were on the waiting list. We were on the waiting list . . . to the waiting list. Depends on the EEG results which waiting list we end up on.
My grandmother was a nurse. My great-aunt was a nursing school professor. My mom went to nursing school when I was 8 years old. I helped her study. Lots of flash cards. For fun I’d grab one of her giant books and look up things in like testicular elephantiasis and smallpox. To her dismay I confiscated her anatomy and physiology book using it as my new coloring book. I call my kneecap a patella and my collar bone a clavicle. Fingers are digits, first through fifth. Things seep in when you are 8. In fact I think we should all go to college/learn a trade when we are 8. So this whole WebMD thing - I was a pioneer. I found no greater joy in life than looking up macabre illnesses and disorders.
In fact I skip right past WebMD in favor of medical journals, case studies, and research reports. And so the night before the EEG I did that. While we were there I sneaked a few strategically timed pictures that I thought I had the best chance to compare normal to abnormal readings with images of ones I had bookmarked the night before. I got home and I compared those. Soon enough I knew that while sleeping it definitely looked like there could be abnormal activity. So that sleep deprived night I went for another round of sleeplessness. If there was a time to see this for myself the time was now. I perched myself and my phone on the bed and watched this boy I have bemoaned for years as a restless sleeper sleep. It didn’t take long for me to video what I believed was "seizure activity." At that point I didn’t have any doubt what the EEG would say. But still I hoped. All those people who know somebody who has a kid . . .
Then the waiting started again. Waiting to get the results, to see the neurologist, for my doctors office to call me back. Waiting waiting waiting. My mind was like a violent game of pingpong ball. From knowing it would be normal to knowing it wouldn't. Feeling stupid for believing whatever I believed in the moment. Back and forth.
Last Tuesday we went in for the results. The EEG was read by a neurologist who I have yet to meet. Activity during both sleep and wakefulness (wasn’t expecting that). Sharp waves, sleep spindles, diffuse slowing, spike and polyspike wave discharges. Focal and generalized epileptiform discharges. In all my research I only saw either focal or generalized. And I still don’t know what this means. Seizure activity surely. I suppose the "cause" is still unconfirmed. Epilepsy is most likely. I won’t get into worst case scenarios. An MRI should soon confirm there aren’t any to concern myself with (we are still waiting to get that done). So if nothing else shows up it’s epilepsy. I am going with that. That’s what it is. On that I actually have no doubt. No violent games of pingpong there. Except for the one where the best case scenario sounds pretty terrible. But be grateful. Could be worse and we don't want that.
I've learned lately that epilepsy is a vast disorder. And just absorbing that is a lot. There are some that go away. There are some that are persistent. Some that are progressive. And it is definitely not all like you see on tv. You might not even notice. Like me. And even with the latter it doesn't mean you'll be able to drive a car or go swimming or go on amusement park rides.
Where we are right now is a frustrating place. Hello this is Luca’s mom. Hi, this is Christine, Luca’s mom. Hi, I am Luca’s mom. I have lots of questions. Questions that lead to more questions. They want to place him on medication already. I have lots of questions about that. Questions upon questions. It’s kind of like when all your blood goes to your vital organs. That’s where I am at. And I think that’s as it should be really. Part of me is embracing it hoping, you know, this is the worst part.
And in the mean time, much to his delight, I've taken to calling him Tiger exclusively because I happened to come across a book this week that said a tiger represents determination, courage, and health. All the things I am trying to pull from the universe right now. All the things I believe my tiger encompasses.