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What Awareness Day Looks Like From The Other Side

These cheesy "awareness" pics I pirated off the internet just because.
Most of you are aware (ha ha) of Leo's tribulation with seizures, though I've probably blogged more about MY tribulations with them. At any rate, you all know that seizures have taken hold of our little lion man at four months old.
They started out fairly mild, and only I could tell when they were happening. He got put on one of the milder medications commonly used for seizures and for awhile we lived without thinking too much about it, because at the time we kinda had bigger fish to fry (like plastic reconstructive surgery etc) and anyway the medicine worked.
Then came that icy wintery night that introduced us to the real world of seizures.
A sixth sense woke me up in the middle of the night to the sight of my baby in the throws of a seizure the likes of which I have never seen before. And it didn't stop. After a sliding down our icy drive in the ambulance, it still wasn't stoping.
After arriving at the hospital ED, getting checked in, and getting a round of meds, the seizure eventually did stop.
We got new meds after that.
Life went on again, and I suppose we became again, more "aware" of the burden that has been laid on Leo and on us.
But again, the episodes were few so being just "aware" seemed like enough.
Until a hazy summer afternoon, a seizure started but did not stop.
This one didn't let go of Leo for four hours.
It felt like forty years.
After THAT episode, once we finally left the hospital almost a week later, I vowed never ever to be just "aware" anymore. I had to be on the ball people! CONSTANT VIGILANCE! Never ever could I let him and us go through such a traumatic ordeal again. (As if I had any control over it..)
We had new meds, we had new rescue meds, we had new seizure action plans.
Forewarned it forearmed right?
A year went by, maybe more, with almost no seizures at all. No biggie I thought, we got this cat in the bag for good. Epilepsy awareness? Ha, we've been seizure free man!

For real "awareness" kicks, let's look again at what epilepsy really is:

"An epileptic seizure (colloquially a fit) is a brief episode of signs and/or symptoms due to abnormal excessive or synchronous neuronal activity in the brain. The outward effect can vary from uncontrolled jerking movement (tonic-clonic seizure) to as subtle as a momentary loss of awareness (absence seizure)."

It's amazing to me how simple it all sounds. Just excessive activity in the brain. Kinda makes me think of a hyper kid after eating too much birthday cake. Excessive!
Who would have thought that such a seemingly benign thing like excessive birthday cake eating could change your whole way of life.
So those lines in the picture above that look like my swirly peppermint chocolate bark did after Nika came by and swirled my straight lines into chaos is what Leo's brain looks like during a seizure. Every line represents the brain waves in a particular section of the brain that is monitored by a glued-on electrode. There are usually forty of them placed on the head during an EEG test. Normal lines look like soft squiggly waves that you can merrily paddle your boat on and seizure waves look sharp and turbulent enough to send your whole ship and crew down to the bottom of the sea. 
There are many different types of seizures, and just as many different types of ways that they manifest in kids.
Leo has by now experienced several different forms of seizures, though they have all been pretty much the tonic-clonic garden variety.

In the world of seizures, I always thought that we were lucky. I would comfort myself back then with the thought that there were kids who had daily seizures! So I had nothing to complain about since Leo's seizures though scary, were far and few between.
Fast forward to last summer: Leo has started a new kind of seizure which effects mostly his eyes and is very short, perhaps ten seconds long. But they are happening ten-twenty times a day.
Old meds dosages are upped, but to no avail. Seizures continue.
A hospital video monitored EEG test is done, but also to no avail though it shows some hard core seizure activity. No boat or ship would be safe on those waters.
New meds are introduced but the seizures continue and seem to effect more of Leo's body.
A course of steroids was given to help calm the inflammation in his brain that all this heavy seizing has caused. There is a pause in seizing for a little, but they start back up again, though instead of twenty times a day we are down to five.
Leo develops an allergic reaction to two consecutive medications that are tried.
Finally one new med seems to work a little, with no bad side-effects. Seizures go down to three a day. Time goes by. (It takes time to try out a new med, because of gradual dose increase or titration as they say). Leo is now on three different medications plus a bunch of other ones to combat side-effects. But he still has one or four seizures a day.
It has now been almost nine months of daily seizure events.
How can I tell you what that is like?
How can anyone but my family really be "aware" of epilepsy?
Nobody is aware of anything, not really, not past the wearing a ribbon or sharing a "I support yada yada day" pic on FB until they have no choice. Until they, or someone they desperately love, has no choice but to become intimately immersed and schooled and hijacked by it.

Until it's your little boat heading out into the gale, the whole "awareness" issue thing is more like looking out at the storm through thick glass windows while sipping hot chocolate by the toasty fire. I should know, because once upon a time, I would never have dreamed of boating during a freaking hurricane. Now? I do it every single day.

And you know what? Me and Leo? 
We sail through those shit waters and we deal.
We OWN that fracking storm.

That's what real "awareness" is.

Happy Epilepsy Awareness Day everyone!
 Let's assume that what it really means is pray for those who carry this cross today, because a little extra love and prayer goes much further in the storm than "awareness" does.


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