Another Day, Another Seizure

Epilepsy never gets any easier.  Or easier to write about.  Awesome had another big seizure this morning.  The second one this week.

I find myself, as always, struggling to find equilibrium.  And little shell-shocked.  Taken with equal parts sadness, disbelief, gratitude that it wasn't worse than it was, and bewilderment.  Thinking about the future.  Trying not to think about the future.  Epilepsy demands that we take one day, one hour at a time.  At the same time we're working out a plan for the future.

Awesome's seizure was not a bad one in the scheme of things.  But in the scheme of things, every seizure is bad.  Every seizure is a little chipping away at hope.  And a little attack on not just today, but the future.

We'd decided to go out for Sunday lunch to an Indian buffet.  Awesome would have preferred to stay home and told us as much.  She couldn't articulate a reason she preferred to stay home.  And in the end she deferred to our preferences.  She had been reading us cartoons from her comic book on the way to the restaurant--punctuating the conversation we her parents were having in the front seat.  When we arrived and parked the car, Awesome had gotten out of the car first, come up to her dad--who was still in the car--and given him a big hug and told him she loved him.  It was a sweet thing to do.  I was looking at her as she hugged her daddy, and thinking about what a great kid she was, when her eyes started to get a little wonky.  Not badly so, but enough that I asked her if she was OK.  She didn't answer, which caused Dad to ask her too.  And just as he asked her, her right arm--still around Dad's neck--started to curve and move upward; her head and eyes to turn right.  I said her name, thinking that perhaps it wasn't too late to get her back.  But it was too late.  Dad, still pressed in her arms asked what was wrong--and I told him it was a seizure starting and to grab on to her.

Thankfully he caught her around the waist before she stiffened; if he hadn't caught her she would have gone down.  I hurried around to open both sides of the van.  Together we managed to get Awesome--stiff and then suddenly not stiff and seizing--onto the middle seat of the van and then onto her side.  This was no small feat as she now weighs 100 lbs. and while seizing is the equivalent, not just of dead weight, but also awkwardly moving and sticking out in all the wrong places.

I managed to get some CBD into the pocket between her lips and gums and rub it into her mucus membranes.  As with the last time I used it thus, I immediately regretted using it.  She was hypersalivating, her diaphragm was involved in the seizure, and generally speaking, her GI tract and breathing were uncoordinated.  Ever since she developed aspiration pneumonia from vomiting during a seizure I worry about putting anything into her mouth during a seizure.  And so, I used a napkin to wipe as much of the oil out of her mouth as I could and then reassured her verbally and with touch as we waited for her seizure to subside.  The tonic-clonic was over in a minute, but she continued to be in an altered unresponsive state of consciousness for another 7 minutes.

It was a little surreal sitting there in a crowded parking lot with the doors of the van open tending to our seizing child.  At some point during this time the owners of the car beside us appeared--two women who looked both uneasy and like they weren't sure what we were up to.  The driver looked like she was afraid to come around and get in her car.  I called out to her that we could close our front car door so it would be out of the way.  She looked suspicious but walked around, and without saying a word to us, got into the car.  As she did so, I told her that our daughter was having a seizure and that we were waiting for her to come around.  Only after she was in the car and started to pull out of the parking space did she stop, roll down her window, and ask if there was anything she could do.  I don't know before then what she thought was going on...  We told her that we had it under control, but thank you.  She drove away.

I found myself very glad that the seizure had happened before we walked into the restaurant.  Seizures in public places are very awkward.  And inevitably someone calls 911.  Which we don't want or need.  Seizures in public often become spectacles.

Eventually Awesome finally shut her eyes and went to sleep, signalling that her seizure was over.  Awesome's dad drove us home while Awesome lay, not buckled in, on the middle seat, sleeping.  And I rode, kneeling on the floor beside her, also not seat belted in.

Awesome woke up as we arrived at home.  Disoriented.  Confused about what had happened.  Apologizing for having had a seizure (she always does this no matter how many times we ask her not to apologize, no matter how many times we tell her it's not her fault).  And generally sober.

And we too were sober.  Thinking about what could have set off this seizure.  Was it the two chocolate chip cookies she ate on the sly yesterday afternoon at her niece's birthday party?  Was it something she did or didn't do?  Or nothing like that at all?   Was it something hormonal or internal?  Or just a random occurrence?  How could we ever know?  We never will know.

What we do know is that she had a big seizure last just 5 days ago.  And that it's not good that she just had another one so soon.  The good thing is that the seizure was short.  And it ended on its own.  Those are amazingly encouraging signs.

What does it all mean?  What does it say about now?  About the future?  About CBD?  About anything?  What does it all mean?

We have no idea.  We simply struggle to recover from the fact that it happened.  We struggle to recover our equilibrium.  And take it one day at a time.  That's all we can do...