A United Front

    

 

 

 

It has been almost two weeks since Presley received her diagnosis.  Since then, I have spent countless hours poring over every piece of information on medical websites that her Neurologist recommended.  As I've learned, I have attempted to inform others in our lives.  Some have taken the information well, such as Presley's daycare.  I honestly can say I really appreciate their support, understanding, and seriousness throughout all of this.  But it seems like a large majority of people are not taking the information well.  Maybe I am just being overly sensitive - it wouldn't be the first time.  But to me it seems that certain people who should be there as part of a support system are either in denial or just don't think Presley's epilepsy needs to be talked about.  I think denial is a normal part of what a person going through internally.  I know it is hard for some who are very close to Presley to think about her having something wrong.  Believe me, I get it.  I'm her mom.  I went through the denial, the guilt, the sadness, all of that.  But at some point I had to acknowledge that this was real, and this was important, and Presley needs someone there for her to fight for her and be her advocate. 

 

I understand that it is scary for others, and I understand that some may feel I am being pessimistic when I relay information about her seizures or her epilepsy, talking about her epilepsy, and creating this blog.  I just want to say that isn't my intention at all.  I am being realistic.  The truth of the matter is that most kids do not grow out of this, most people with these types of seizures can't be helped with medication, a lot kids like Presley end up having surgery or an implant to control their seizures, it is very common for children who have seizures and are on anti-convulsant medications to need some sort of help with development through therapy, and that we may have to get a Seizure Response Dog for her when she is older.  I don't want to seem pessimistic, but I also don't want to set myself up.  Of course, I know these things aren't cut and dry.  And it's true that not all children are affected this way.  But the odds are really against her right now and I want to be there for her as a support, to help her grow as an independent individual.  I want the best for her in life.  I don't want to sugarcoat things for her and try to ignore the issue.  I want her to be able to say as an adult, "Yes, I have epilepsy, but it doesn't define me."

 

I guess what I am trying to get across is, by ignoring the issue, Presley isn't getting the help and support that she needs.  If you don't educate yourself on what she is dealing with, you can't really help her be the best person that we all know she can be.  We all need to be a united front in helping her grow into a strong, independent adult.  I am also afraid that if everyone in her life is afraid to talk about it, she will feel as if it is a shameful thing that she should hide.  And I don't want that.  I don't want that for her and I don't want that for any other individual who has epilepsy.  That is why I am trying so hard to get the word out there.  I want Presley and everyone else with epilepsy to be able to have the best life possible while living with epilepsy.  I want people to be educated, so that the social stigma and the misconceptions can stop and people with epilepsy can feel like they aren't being ostracized.

 

Being realistic about a diagnosis of epilepsy and the types of seizures someone has, is not a bad thing.  It helps us prepare for the future and best help those with epilepsy.  It does not mean that my love for Presley has changed.  If anything, it has made my love stronger.  Every day, I thank God for her.  Everyday I stare in amazement at how beautiful, happy, and smart she is.  I still see a bright future for her.  I still have a small hope that she will not have to deal with epilepsy her whole life.  Nothing has changed.  But like I said, we all  need to be educated, honest, and open about this.  Not just those of us in Presley's life, but everyone else who may know someone with epilepsy too.  That is the only way we are going to have any hope at being as supportive and helpful as possible, and the only way that we can assure that everyone with epilepsy can have as normal and bright of a life as everyone else in society.



Welcome to My Blog!

Hi!  Welcome to my blog!  I've been creating this blog in my mind for the past four years or so, however I am just now getting the guts to start it.  And of course, once I started this page, I couldn't figure out what to write.  So, let me start this off by telling you a little bit about me and a little bit of what you can expect in my future entries.

 

 

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.