I am so sick of dealing with seizures. I am sick of worrying about them, sick of timing them, sick of logging them, sick of discussing them, sick of making sure we do not run out of all of her medications that are supposed to be controlling them but aren't, sick of hospital stays because of them,and most of all sick of the completely helpless feeling I have when The Toots is having one.
Try to imagine planning for a storm that could very well be life threatening and may occur any time and any place without warning. It will be a storm that you must face head on in order to deal with. There is no underground cellar. No safe place to hide from it's wrath. And just to add a little more drama, it will be all up to you to decide how to handle this storm in order to save the life it is endangering.
There are times I am in tears after the 'storm' because it has scared me so badly. Other times I could quite literally fall asleep from the adrenaline rush it produced in response to dealing with it. But mostly, I am just pissed.
Pissed that in the year 2010 there are no cures for this disease called Epilepsy, and not much money being spent on searching for the cure. Pissed that if President Obama, or Bush or Clinton had had a child with this disease you can bet your ass there would be plenty of funding available for that research. But mostly pissed because as a parent, job number one is to keep your child safe, and when The Toots is in the throes of a seizure, I feel so damned helpless.
Every morning and every evening my hubby and I pump enough meds into the Toodle Bug to put down a Rhinoceros on an African Safari because they are supposed to "control" the seizures. Those are just her normal, everyday meds. Not to mention a life changing and semi-risky diet to try to gain some kind of control. And when the 'storm' breaks through those defenses we play the wait and watch game.
This involves watching your child, your BABY (because aren't they always our 'baby'?) contort their face and body and thrash around like a shark thrown on the deck of a boat. They have no response to your consoling words or your soothing stroking of their body, in fact they have no idea you are there, but you continue to do it anyway in the vain hope that they somehow understand that you are trying to help them. Then the perfect storm strikes and a rogue wave appears as if out of your very worst nightmare... they stop breathing.
The whole time this is happening you have been keeping track of the time because there will come a minute, a split second when you make the decision to give the Valium and Oxygen because your child has stopped breathing and you have realized that they will not break this one on their own. There are pretty precise guidelines for when to give this medication but, ultimately, it will be up to you and your instincts to realize exactly how out of control things are spiraling and based on that, when and how, to react. And if you are very, very lucky, you will have a Buh or a Sheila by your side who is fighting just as hard as you are to beat back the 'storm'.
Once the decision has been made you will act with precision and authority and will do what must be done to get your baby back to you. Once the med goes in, within several seconds to several minutes she will heave a big sigh and look at you with a bit of recognition. But for just a second, as you push that med into her little bottom, the guilt of knowing you are literally "doping" up your own child because that is all you can do to help them will break your heart. Mostly you will just feel relief that the medication worked because there is always the fear that "this" will be the time that it doesn't.
The Toots will then be in a kind of haze from the toll the seizure and subsequent drugs have taken on her body. She will drool. A lot. She will not be the happy, giggly girl we are all used to. She will stare off into space in a drugged stupor. This may last for several hours or all day. I will immediately put on that G*damn Spongebob Movie to try to get her to smile or even respond to me and I will let her watch it all day if I have to just to see her smile.
Tess has had two seizures in the last three days that, when totaled together, lasted approximately fifteen minutes. Could you tell from all of my whining? Yet, as I am typing this she is literally laughing out loud while I piss and moan about how "sick" of seizures I am to those of you who have actually read this whiny little post through to the end...which makes me wonder, maybe someone needs to shove something up my butt?
Just a thought....