Let's Try Being Honest...



I've been doing some thinking.  Which is never a good thing, especially if you mix it with the frustration I've been feeling lately at the seemingly lack of support we've received from people we know.  Combine that with a smidge of PMS and you have the potential for a volatile post.  Hey, the title is "Let's Try Being Honest", so that's what I'm doing...

Kaitlin's Cauze has contacted numerous media sources in October.  We outlined what epilepsy is, we explained how epilepsy affects people.  Not ONE source bothered to do a story.  I guess it's more important to report on the new bridge going in. Or when Santa is coming to the mall. Or the soaring gas prices.  Yes, Captain Obvious- the economy is still lagging, do we really need to read about it AGAIN?

I've been thinking of WHY epilepsy doesn't get the recognition from the government since it IS one of the leading neurological disorders? WHY, if it's been around since biblical times, do we not have a better understanding of what causes some people to have seizures and why aren't we closer to a darn cure?  WHY are there less prevalent diseases/disorders out there that are getting more funding for research and all the fame?

Reason number one- take a look at the average person with epilepsy.  What do you see?  I look at my daughter and I see a beautiful young lady who does well in school, picks up music easily, loves art, has a passion for softball and who, for lack of better words, APPEARS healthy.  I see a young lady who is trying to show the world that she can do anything she sets her mind on, even with epilepsy.  What you don't see is the hours she spends on her school work just to memorize 10 random facts, because epilepsy has robbed her ability to remember short term events.  Or how it's easier for her to play her music by ear so she has to practice longer just to "remember" how to read music.  Or how on a hot summer night when her friends are at softball practice, she is home in the air conditioning because heat and humidity don't do well for her seizures.  I see a young girl who may not get her permit/license when she hits 16 like the rest of her friends.  A young girl who will most likely face employment discrimination if she is honest about her epilepsy...

Now, imagine a girl, the same age as Kaitlin, sitting in a wheelchair.  This girl doesn't speak clearly and cannot walk. She relies on her family to take care of her needs.  She has a less prevalent neurological disorder than Kaitlin.  But, the world looks at this innocent young girl in the wheelchair, and our hearts go out to her. And of course we want to help because that's how we as humans are programmed.  Of course we want to find a cure for this girl, she OBVIOUSLY needs it. 

People who appear different are the people who get our attention...

Afterall, Kaitlin is determined to save the world so she must be ok.

I'm all for being optimistic.  It's what carries me through the day when I really just want to pull the covers over my head and not move.  It's what keeps me believing that Kaitlin WILL outgrow this.  That Amandya, Meghan, Ilana, Michelle, Nickolas, Hannah, Mackenzie, and Noelle will ALL have a chance to live a NORMAL teenage life, WITHOUT seizures. And then I think about it some more, and I get pissed off.  I get even more angry at people who tell me to "relax" and "it'll be ok".  You try relaxing when you walk our journey. You try relaxing when you actually get educated on all the facts/risks associated with epilepsy.  You try relaxing when this is your child! 

I'm losing my optimism.  And I don't know where to look to find it.

I read story after story of how this person overcame epilepsy and defied the odds and is a pro athlete (insert any working profession).  And the message I'm getting is that people with epilepsy can live a normal happy life- because Joe Schmoe from the NFL did.  Well kudo's to Joe.  Did Joe share how many pills he takes a day to control his seizures?  Or how has to get a ride to practices/games because he CAN'T drive a car?  Did he tell you the horrible side effects that he endures from his medicine?  No, he told you he has epilepsy and he plays football and he's not letting epilesy have him.  yadda yadda yadda...

Can we be honest?  Can we just let the world know that seizures suck?  That seizures kill?  That seizures don't just affect the person who has them, but affects every person living in the household?  That parents of kids with epilepsy live each day with worry, apprehension, fear, anxiety?  That the side effects of seizure medicines are often worse than the seizures themselves?  That you DO change the way you live when epilepsy comes knocking? That parents are absolutely terrified at night because they know SUDEP is real?

Can we just be honest?  Do you think people will listen then?


Written by Kim- mom to Kaitlin.