AND...We Have Launch...

Well, as promised, Kaitlin’s Cauze will be doing a blog-a-thon for the entire month of November, which just in case you didn’t know, is Epilepsy Awareness Month.

I was going to post Kaitlin’s story for today, since it is HER blog; but decided instead to use the picture to create the story.

The picture shows Kaitlin riding a roller coaster at Hershey Park. The roller coaster is Storm Runner, and it launches you from 0 to 72 mph in just 2 seconds flat. Crazy huh? 2 seconds!? Think about it.... 2 seconds doesn’t seem like a great amount of time, but apparently it’s enough time to send your body hurling to 72 miles per hour, (leaving your heart behind at the station, I might add) therefore; 2 seconds is plenty enough time to change your circumstances.

...Kaitlin closed her eyes to take a nap and WHAM the seizure came… Totally unsuspected. Totally by surprise. In less than 2 seconds, in the blink of an eye, our lives changed…

To some extent we are still reeling from the changes epilepsy has imposed on our lives. People who tell you that epilepsy doesn’t change how they live are deceiving you. Fact- epilepsy may not change who you are (although in a lot of situations, it really does) but it most definitely, without a doubt, changes how you live.

For our family, epilepsy made my husband and I re-evaluate what was truly important in our lives. It made us communicate with one another and it united us as a team against epilepsy. It also got us back in church where we’ve spent a lot of time on our knees thanking God that Kaitlin seems to be responding well to treatment and asking Him to lead us to where He wants us to be in the world of advocacy.

It also means that as parents, we are forced to make decisions for Kaitlin that under normal circumstances would not even warrant a discussion…

For example- under normal circumstances we wouldn’t think twice of sending Kaitlin to the pool with a friend. However, now we are forced to pay attention to the parent that will also be accompanying them. We have to be able to trust the friend and the parent to keep a watchful eye on Kaitlin at all times.

Other examples of discussions have been whether or not to allow Kaitlin to attend birthday parties where circumstances may not be the greatest for someone prone to seizures; or whether to allow her to move up to the middle school class at our church, LCBC. Technically, Kaitlin should have moved up last year, but since all of her "besties" are a year younger than her, we allowed her to stay down in 56 with them. Our thinking was, and still is, in a church the size of LCBC, where an approximate 7,000 people gather each weekend, Kaitlin could easily be "lost" in the crowd. Her friends know she has a seizure disorder and they know how to respond if she has one. I feel much more comfortable knowing she has her little posse with her watching over her, and Kaitlin is thrilled to have one more year with Chad, the leader of 56. It's a win:win.

Even a trip to an amusement park has warranted some discussions. Do we allow Kaitlin and her friends to ride the Ferris Wheel alone, or does an adult go? People not in our situation would quickly tell us to let her go and that she’ll be fine. These are the people that probably don’t quite realize that a complex partial at 100 feet in the air could have devastating results.

Often times for us, the fine line between being overly protective versus using common sense seems pretty black and white. For those who don’t understand the impact of epilepsy, the line, to them, is blurry. They just don’t seem to grasp that a seizure isn’t just a seizure.

Yes, there are associated risks with everything we do in life. For instance, Kaitlin could have a seizure while eating and choke. Does this mean we don't let her eat? Or that we mince her food? Of course not. Again, there is a balance that we try to find. We strive to use common sense when making decisions with regards to Kaitlin's activities.

We all know that standing under a tree during a thunderstorm is probably not the best idea- because there is a risk of being struck by lightning. The chances of it actually occurring may be small, but it's still a risk many of us are not willing to take. Therefore we practice common sense.

The same can be said for us when facing decisions like the Ferris Wheel. Yes, the chances of Kaitlin having a seizure while being 100 feet in the air, in a carriage that has no latches on the entry gate (I checked... these gates can open during the ride...) are probably very slim. But, the risk is still there. So, as parents we have to weigh the possible risks associated with the event and come up with a way to modify the situation, when possible. In this case we let Kaitlin ride the Ferris Wheel with her friends, but we re-iterated to her friends what to do should a seizure occur in mid-air.

We don’t want to let epilepsy dictate how we live our lives but sometimes we just don’t have a choice… It is what it is, but thank God it is only what it is. We realize that even with epilepsy, it could be so much worse...

Please take a few minutes to get seizure smart, stop by Kailin's webpage: Kaitlins Cauze. While you're there please sign her guestbook and let her know you stopped by...