My name is Shayna, and this is what I look like:
Okay, well not what I ALWAYS look like. Just like, maybe, once every six months or so when I actually wake up BEFORE my classes start.
More often, I actually look like this:
Translation: I look TIRED.
But one time, I looked like this:
Yeah, I know, it looked better on the hot chick on King of the Nerds.
And sometimes, after a particularly long day of stressful appointments, I tend to look like this:
Oh, you know, just me and my princess unicorn hanging out....
So there you have it, the many faces of me. Scary, I know, but what fun would life be if I couldn't laugh at myself each time I looked in the mirror? :-)
So, now you're probably wondering, what is this blog about and why did this crazy lady start it?
Well, here is my reason:
Isn't she just so stinking cute!?!
You see, that up there is a picture of my world. That is my daughter and she is my whole life. I can honestly say that she completely changed my life when she was born. Her name is Presley and she is 3 years old. Some of you are probably wondering WHY I am starting a blog about Presley. I can see it now, you're sitting there thinking "Oh God, here is ANOTHER mother who is going to brag to the world that her child is the smartest, coolest, fastest, most amazing super child in the world." And you're right, I do think she is all of that and more. But Presley has also had an amazingly hard journey in life so far. Shortly after birth, her lung unexpectedly collapsed and she was put on a ventilator, chest tube, and many other wires and iv's to save her life. After a couple weeks in the NICU, she was sent home "perfect as could be". We weren't home three weeks before we were back in the hospital, this time in the PICU for an infection. And so the cycle has continued. I can't honestly remember one month where we weren't in an emergency room, urgent care, or doctors office with Presley. Our local dr's kept assuring us that as she grew older, things would get better, she would be healthy as a horse by the time she was 2, then 3, then 4. Along with numerous viral infections, Presley also battles chronic Urinary Tract problems. And then she had her first seizure at 13 months old. Doctor's assured us it was just one of those things that sometimes happened and she PROBABLY wouldn't have anymore. But then right after she turned 2, she had another grand mal seizure. This time, dr's said maybe she is hypoglycemic and sent us home with instructions to keep her sugared up, which we did. And then around her 3rd birthday she had ANOTHER seizure, and then another, and then another different kind of seizure. Between the seizures and the urinary tract issues, we knew we weren't getting the best care here because there just aren't many option for pediatric care in our area. So, we made the decision to move all of Presley's care to a Children's Specialty Clinic and Children's Hospital about an hour and a half away. Since then, we have not learned why Presley has such a fragile immune system or why she has issues with her urinary tract. However, just last week we did get a diagnosis of Left Temporal Lobe Epilepsy and learned the terrifying truth - that she has been experiencing Complex Partial Seizures all day every day and Nocturnal Seizures every night, unnoticed. Talk about Mommy Guilt! I sure was feeling it after hearing that.
Anyways, I don't want to bore you all with all the details today of every little thing we've gone through. But I do want to keep this blog as a way to not only get my feelings and emotions out there in writing (because let's face it, being a mom to a kid with chronic medical problems is HARD) but also to be there for other's. Maybe there's a mom out there who is feeling scared and lonely and wondering why they can't get a diagnosis or any help for their child. I want to be here to offer support and encouragement, to let them know "hey, you're not alone, we will do this together!". And most of all, I want to make the world aware. Mostly of the type of epilepsy that Presley has, because although it is very common in children with epilepsy, most people don't know about it. And that makes the children with the disorder, and the parents of these children, feel very alone and ostracized. There are so many incorrect assumptions and such a stigma out there. I want people to hear the TRUTH of childhood epilepsy and Complex Partial Seizures. Maybe I have a small hope that if more people are aware, there will be more acceptance and understanding in the world. After all, understanding and tolerance of other's is really what makes the world a nice place to be.
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