Raw Reality

I think, on some level, I have been avoiding writing this post for weeks.  I don't particularly like the emotions it is making me re-live and confront.  But, it is my reality, and I do feel like by sharing it may help others.
**Please note...this is a post into a deeper and darker part of my life with epilepsy.  If you are easily upset...you may want to skip this one.

       (*deep breath*)

Let me start by saying...I HATE SEIZURES!  And I am not a person who truly "hates" by nature....so for me to say that is saying quite a lot.

THE MOST RECENT HATE TRIGGER:
It was weeks ago that Evan had a cluster of breakthrough seizures...each worse than the last.  It was a nice evening that became chaotic quickly.  It started with just an eye twitch, then a large round of vomiting followed by inconsolable crying with no discoverable cause.  To make matters worse, we weren't home at the time.  Once we had calmed him and gotten us cleaned up, we thought we were in the clear, so we headed home.  For some very strange reason (intuition?), I decided to sit in the back with him.  We were nearly home when seizure #2 hit...this one started with more vomiting, and then his more "classic" seizure activity of facial tics, eyes fixed and dilated over one shoulder.  It ended before we got home, and before the 5 minute mark.  Once home, we stripped down.  For the second time that night we were both covered in vomit.  I took him upstairs and he proceeded to go into yet another seizure.  This time, no waiting...Diastat...STAT!!!  As if all of that wasn't bad enough...

The Diastat did work, his seizures slowed and eventually stopped.  But his breathing slowed as well.  He was now a limp shell, laying mostly naked on the floor in the rescue position.  His face started to become pale and his lips had a bluish hue to them.  This was new to us.  This was not normal.  In a panic we called 911.  As I called to Evan, trying to bring him to some level of consciousness, I agitated his chest with my hand to encourage deeper breathing.  It was helping...but his breathing was still extremely irregular and shallow.  If I stopped, so did he.  It seemed to take forever for everything...for his breathing to regulate, for the paramedics to get there, for it all to be over!!  I felt so helpless, so lost, so scared.  I didn't know what was going to happen or if he was going to be ok.  All I could do was pray, call to him and keep rubbing his chest...watching for signs of further distress.

Thankfully, his breathing did regulate.  The medics did come and assess him, and we did go into the ER as they were suspicious that he aspirated on his vomit at some point.  Sitting in the ER leaning on the rail of his hospital bed while he slept, I started to cry a bit.  Up until that point, I've never really asked God "Why?...Why him?...Why us?".  I feel some shame in admitting that I did question God and His plan.  But, I did, and then I simply prayed.  A nurse came in and I quickly pulled myself together as he was wheeled off for chest x-rays.

In the ER

In the car on the way home, I was nearly trembling as I felt all the emotions welling up just below the surface, and I silently prayed my husband wouldn't touch me or say anything caring as I knew the flood gates would open.  Now, having them open wasn't what I was afraid of.  I was exhausted, it was after 3am, and I wasn't sure I would have the strength to close those gates once they were opened.  I felt as though I was suffocating, and only imagined that it would be worse if those gates opened at that moment.  Honestly, I didn't cope with my pent up emotions until almost 24 hours later when I broke down in my husbands arms and just sobbed.  So much fear, sadness, and a dash of relief that Evan was ok came pouring out.  It was horrible and good at the same time.  An absolute juxtaposition of emotions.

THE POINT:
But...this all isn't the point of this post.

The point of this post is my hatred for epilepsy and seizures.  The point is the tireless battle we are fighting.  The fact that every moment of our lives is now lived with the added stress of epilepsy and all that goes along with that diagnosis.  Living in fear...praying that we don't someday wake up and find that SUDEP has taken our beloved child.

It was only a few days before Christmas that he last had seizure activity (small celebration...almost 4 months between seizures).  It was another cluster of seizures in the wee hours of the morning.  My husband heard strange noises coming from his room and insisted we needed to check on him.  I thought it was just his normal movements.  Reluctantly, I went in to his room and when I saw him, my hear stopped!  Panic entered my body.  His little body was limp, unresponsive, and face down in his mattress, laying on urine soaked sheets (he NEVER wets at night unless he has a seizure).  After I removed him from bed, he went into another seizure.  It terrifies me to this day (and brings tears to my eyes) to think what could have happened if my husband wasn't so insistent...if I had succeeded in dismissing the noises as "normal" and simply rolling over and going back to sleep.  I feel panic just writing this... panic and guilt!  I'm his MOM...I should have known!  The thought of what could have been keeps me up at night.  Every time I hear movement from his room my heart stops, my eyes grow wide, and I feel adrenaline and panic entering my veins as I listen intently to decipher if it is his normal moving in his sleep, or if there is a seizure-like "rhythm" to the movement.

HATE AND FEARS:
Parents of all children have fears.  And I know tragedy can strike anyone at any time.  But to have it thrown in your face, to brush with tragedy so frequently, for there to be a cause of all of this...THAT I HATE!  I hate feeling scared so much.  I hate that it makes me nervous to go out on a date with my husband, or to take a much needed and deserved vacation.  I hate that I feel compelled to have my phone with me at all times (literally) when he is not with me in case he has a seizure.  I hate feeling utterly helpless and unable to protect my own child from the terrors he faces, especially during a seizure.  I hate that this has already had such an impact on his short life.  I really hate that there are so many out there that are experiencing the same feelings.  I hate the fact that, whenever we want to get away for the weekend, that we have to think about where the nearest emergency services are...just in case!  I hate that we have had to turn down vacations with close friends if it was too far away from services.  I hate the medications and their laundry lists of side effects.  I hate that even neurologists can't give me straight answers to my deepest and biggest questions.

THE HATRED AND "DARK SIDE"
My heart aches for this all to just go away.  I hate that I feel hatred for something so deeply.  Even in Star Wars we are taught to fight feelings like hatred lest you turn to the "dark side".   But my son is being attacked.  I am his mom and I want to protect him like any "mama bear".  But, this attacker hides in the shadows, sits silently just watching and waiting to strike again.
Epilepsy, you are a COWARD and I truly HATE you!
I will fight you with my every breath.  I am throwing everything I can possibly find at you, and will continue to do so.  I will continue to seek out ways to destroy you.  I am fighting you with pharmaceuticals, with diet/nutrition, with naturopathic medicine.  Most importantly, I am fighting you with prayer and the grace of God.  And...I am NOT alone!