International Purple Day!

Okay everyone!  It is fast coming up on International Purple Day.  This is the day that, around the world, we are trying to raise awareness of epilepsy.

From the official Purple Day website

Purple Beginnings

Cassidy Megan created the idea of Purple Day in 2008, motivated by her own struggles with epilepsy. Cassidy’s goal is to get people talking about epilepsy in an effort to dispel myths and inform those with seizures that they are not alone. The Epilepsy Association of Nova Scotia came on board in 2008 to help develop Cassidy’s idea which is now known as the Purple Day for epilepsy campaign.

As of about 30 min ago, I became a local Ambassador of Purple!

Am I totally weird?  Probably…

Do I really want to take this on… I don’t really want to have to… but I really want to do this for squirrel and for everyone who has to wake up scared from a seizure… and for every parent or loved on who has seen a seizure in process… and for everyone who has not yet seen one but who might be faced with seeing a seizure.

I guess I never really realized that people who I think ought to know what to do, how to deal with a seizure really don’t know.  Do you know that your school’s faculty may not have ever learned what to do in the event of a seizure event?  There are at least 8 kids in my son’s class (if statistics are even CLOSE) who have epilepsy.  There are 8 in my daughter’s class… 16 in half the school… 32 kids in the whole school?  Really?  an ENTIRE classroom full of kids every year and the teachers are asking me what to do in the case of a seizure?  Dang…

It is scary…

I think that was when I decided I needed to do something to help.  So no one has to whisper that they have epilepsy.  Son no one laughs when they see someone in the middle of a seizure, or thinks that if they try to help comfort someone as they are seizing or as they are coming out of an event that they will catch something.  They aren’t having a fit.  They aren’t crazy or possessed or going to swallow their tongue.

This is my way of reaching out and making sure that for my kid and for every kid (and adult for that matter) can know that no-one is going to judge or fear.  Yes, it can be very scary, but if you have epilepsy…  epilepsy doesn’t define you.  It is a part of you, it is a part that makes you who you are but it can’t be allowed to consume who you are.

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1 Comment (+add yours?)

  1. MMC
    Mar 17, 2010 @ 21:30:48

    I just found your blog today through the Purple Day website and have been reading through it. First let me say thank you – both for being a Purple Day Ambassador and for chronicling your daughter’s journey. I am sure it will help many families.

    My oldest will be 17 in a few weeks. She started seizing at 13 months of age. Before that she was a totally typical baby. The Blue Jay (as I call her) has other issues as well but the seizures were the biggest challenge in our lives for so many years. After six drugs that never so much as touched them, we tried the ketogenic diet. That was the first thing that gave us any control. The Blue Jay was on it for 6.5 years. She has been off the diet and on Keppra for about 5 years now. Miraculously it is working very very well for her. I pray for the same for you daughter, that the Keppra works for her.

    As alone as I’m sure you feel at times, please know you’re not. Feel free to follow my link back to my profile page and email me if there is anything I might be able to help you with. Or if you ever just need someone to talk to. We’ve all been there.

    Hang in – my mantra over the years when things have been at their worst (the Blue Jay use to be hospitalized 4 times per year like clockwork for a couple of weeks at a time with her seizures for many years) was … This too shall pass… this too shall pass….
    Repeat ad nauseum as needed.

    Reply

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