Sunday, March 26, 2017

Just another day...

I have a confession to make.

Today was Epilepsy Awareness Day and I didn't even acknowledge it. Some people also refer to it as Purple Day since that is the color for Epilepsy Awareness. They dress in purple and encourage others to as well. Many memes and statistics are posted on social media sites about epilepsy to raise awareness.

I literally did none of those things. Not one.

The only real excuse that I have as to why I blew if off is because every day is Epilepsy Awareness Day in my house. And to be honest, I'm sort of over it. I'm tired of it consuming my thoughts. I don't want to wear purple or post information because I already know too much and it's pretty scary. Granted, the posts are to educate those less familiar with it than I am but I just don't want to give it any more of my attention than it already demands from me.

Tess has had three seizures this week and the shortest one was close to five minutes long which meant rescue meds had to be given during each seizure and her heart rate and oxygen monitored. And bonus, she started a new fun game I like to call Scaring The Ever Loving Crap Out Of Mama.  This involves her not taking any breaths during some of the time that she is seizing.  As in, not breathing. At all. There was a moment during one of the seizures where I literally shook her by the upper body to try to make her take a breath. And I'm not super proud to admit this but at one point I was saying to her, "You need to breathe Tessie! You're scaring mama!". Because, you know, she was totally in control of what was happening and me saying that would snap her out of it. *snort*

So yeah, as I was saying, I'm over the whole Epilepsy Awareness thing. God Bless those who are totally into it and show their support but this girl is out. At least for this year. Maybe something will change and I'll have a fresh new attitude for next year like I have in the past.

Maybe not.

And let me also defend my sour puss attitude by saying that it seems like every day is an "Awareness Day" for Tess somehow.

For example:

Today is Epilepsy Awareness Day.
Yesterday was National Cerebral Palsy Awareness Day.
There is a Feeding Tube Awareness Week.
There is Rare Disease Day.
There is Undiagnosed Day.
There is Scoliosis Awareness Month.

You can see where I'm going with this, right? I mean, my little Tessie fits all those categories. That averages out to a disease or syndrome every other month, and I'm willing to bet I could find even more for her. (I literally just googled quickly and already found another.  Rare Chromosome Disorder Awareness Week. No joke.)

To all this I'm saying, Enough. I've had enough. How can anyone possibly keep up?

We are currently waiting on genetic testing that was done on Tess at the end of December. It's the "Cadillac" of genetic testing at this point in time and the neurologist who ordered it is very hopeful that we can finally, after almost fourteen years, get a real diagnosis for Tess. Or at the very least, the testing may reveal something that could point us in a better direction to try to treat her seizures. I have to admit to being excited, and a little scared since sometimes ignorance is bliss,  to get the results.

I'm willing to bet if we do get an "official" diagnosis I will be all over whatever "Awareness Day" is associated with it.

But for now I'm going to stick with the only "Awareness Day" that totally covers all of the "Awareness Days" mentioned above.

Her Birthday.

Lastly, I do want to give a shoutout to all the Epilepsy Warriors (and their families) out there. Not because it's Epilepsy Awareness Day but simply because this journey is unbelievably hard and we deserve a great big pat on the back for getting up every day to face it all again and again.

And to everyone else all I can say is, if you're lucky enough to never have had to experience seeing a loved one have a seizure, then, as the saying goes, you're lucky enough.