FU Epilepsy

I know I have said it before, but I will say it again, Epilepsy it the worst.  I hate it.  We all hate it.  It has the power to take so much from you and those around you.  It can take everything.

We have spent so much time giving in to Epilepsy and letting it take nearly everything.  Cancelling plans, making rainchecks, making excuses, all so that we could give into the feeling that we were helpless against this Epilepsy.  It has changed out lives in so many ways that I can’t even begin to explain.  But this is not the end, this is the end of the beginning for us.  In the beginning we gave into Epilepsy.  Now, at the end of the beginning, we say FU Epilepsy.

With Reagan off of all of her medications, there has been no change in the amount of seizures she has.  Over 2 ½ years of intense medications, and without them, she is at the same place she was with them.  It’s hard information to stomach.  But, it made us realize that it would be what it is regardless of what we did these past few years.  That isn’t so say that it still doesn’t ebb and flow. She’ll have a really bad few days, and then some really good days or weeks.  We know that if we go camping or stay up late watching fireworks, and she’ll inevitably have more seizures that night and the days following.  But, she always recovers and bounces back, regardless of how hard her days are. *knock on wood*

This summer we decided that we were done with the excuses and letting Epilepsy take over.  We were going to live our lives how the three of us want to live them, not counting seizures, but counting adventures.  This is how we say FU to Epilepsy.

Staying up late to watch the fireworks will make her seizures worse.  FU Epilepsy, watch this.

Camping two nights in a row is too much for her and her seizures.  FU Epilepsy, watch this.

Playing in the hot sun too long can give her more seizures.  FU Epilepsy, watch this. 

Exploring the woods out of site of Mom & Dad is dangerous if she has a seizure.  FU Epilepsy, watch this.

You can’t do swim lessons, what if you have a seizure? FU Epilepsy, watch this.

I like to think that Blake and I have mastered the art of invisible helicopter parenting.  We are always on alert, and even when she’s exploring the woods alone, we are still close, just not where she can see us or feel us hovering.  As for the swimming, we have held off for so long because her seizures but, FU Epilepsy, she’ll learn to swim, just not with her face in the water.  Problem solved.

Reagan & Blake caught their first fish together this weekend!  She was so excited and not only ate it all, but help in preparing it, all the way down to gutting it!

Reagan showing us the path she discovered in the woods while exploring.  She took us on a long hike looking for treasure!