Epilepsy – The Shape-Shifting Beast

As far as epilepsy is concerned, I have always counted us among the lucky ones.  For years, I’ve watched as my friend’s kids have received diagnoses of Infantile Spasms, Dravet Syndrome and other severe forms of seizure disorders.  I’ve witnessed the daily episodes, the failed meds and the endless battles they’ve endured.  And throughout those experiences, I have been grateful that, for us, only once or twice a year did we find ourselves making the decision to call 911, give rescue meds and once again return to the hospitals we’d come to know so well.  

But no matter how much thanks you give for a good fortune, it sometimes only lasts so long.  It seems that we are now joining the ranks of the more seasoned epilepsy families.  Today was yet another seizure day for Oliver.  His 6th in the last 2 months.   It was mild but long.  Just like on Christmas Eve, he seemed to be under a spell, watching an aura, feeling something strange but almost pleasurable.  Like maybe that feeling of losing your stomach when you go over a whoop-de-doo on a hilly road. Or maybe it’s more like watching the wonder of the world unfold on magic mushrooms. Maybe he’s meeting the Buddha.  Who knows, man….

He smiled through the first 30 minutes, until he turned red, started sweating and vomited, heaved and aspirated the thick mucous that came up.  Then he sobbed for over an hour, clearly in pain from another cause unknown.  After that he fell asleep – something terribly uncharacteristic for him- and rested until he woke up, vomited again, and then fell back to sleep.  An hour later he awoke dazed, looking around, perhaps re-aquainting himself with this realm.  

Epilepsy… you shape-shifting beast… your presentation ever-evolving as our child’s brain changes and grows.  We’ll never really know what you have in store for us next, will we?  What will come of each new day?  Will you be brief or prolonged?  Will you come out of nowhere or will there be warning signs?  If there are, will we miss them anyway?  When should we be prepared for your worst?  Can we ever let down our guard?  

Today was only the second time I haven’t been present for one of Oliver’s seizures.  My husband handled it all.  He protected his airway.  He gave the meds.  He took the videos.  I was an hour and a half away, trying to address my own health problems, feeling helpless and attempting to shake off the stress.  I sat in the waiting room today and hugged my arms tight to my stomach.  As my foot shook neurotically back and forth, I quietly coached Conrad through the dose of rescue med, the revised seizure plan and what to tell the paramedics should it go that way.  Despite my watchful eye, the stress crept in, freezing up the muscles in my back.  I tried to remind my body that, although it’s been conditioned to equate seizures with emergency and trauma, maybe this wasn’t going to be that kind.  But unlearning trauma responses takes time and, for me, that process has only just begun.  Our cells have memories all of their own.  

Thankfully, today’s seizure resolved itself once again, without a hospital stay.  And if you’ve gotta have a seizure day, it sure is nice when it goes that way.   Tonight he’s alert, drooling a lot more and just in the general post seizure readjustment zone.

Although denial seems like a pretty solid option at the moment, I am aware that most likely, this is just what our new normal will be.  Some days our child will seize.  And on those days, we will turn him on his side and save him from choking to death on his vomit.  It’s actually just that simple and that serious all at once. Some days, one of us will be alone, juggling both kids, wondering how we’re going to handle what has come.  Some days our bodies will remember that we aren’t actually being chased by lions and some days, they won’t, and the trauma will win.  And some days, hopefully most, none of this will happen.  And we’ll go about living our own variation of normal life, free and clear, of the epileptic monster.

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