Wednesday, March 26, 2014

Today is Purple Day

Today is Purple Day. It is a day dedicated to increasing epilepsy awareness worldwide. My daughter Taylor has epilepsy, but it is something that I never really gave much thought to until a few years ago. Taylor was diagnosed at 9 months old but her seizures were pretty much under control for several years. She’d have one or two seizures a year. Taylor had several other health issues that we were dealing with at the time so epilepsy was the furthest thing on our minds. That has changed in the past 2 years. Taylor’s seizures have become more frequent and more severe.

Today Taylor woke up in a fog, still feeling the effects of a heavy seizure day yesterday. The after effects of a seizure can take quite a toll on the body; exhaustion, headache, even temporary paralysis. The effects of several seizures in one day beat the body down. Imagine a boxer, picking himself off the mat after a hard punch, only to receive yet another that knocks him back down, then another, then another, until finally he’s on the mat, TKO, unable to stand. That’s Taylor after a heavy day of seizures.

Today is the third day of school this week that Taylor has missed because of seizures.

Today we are digesting a possible diagnosis of a serious form of epilepsy called Lennox-Gastaut Syndrome. We feel like the boxer too, after having received a punch in the gut. But, like the boxer, we’re standing right back up to take our punches. Just like all of the families who struggle with epilepsy. We’re a tough bunch. We fight back. We fight for our children, we fight for new medicines, we fight for awareness.

 Today, I wear purple. I wear purple to show my support for my friends and family members who struggle with seizures. I wear purple in honor of the wonderful friends I have met in my journey. I wear purple so that kids like Taylor, her friend Livy and so many others don’t have to wake up in a fog, don’t have to miss school, don’t have to have seizures.

Today, I saw the support of so many friends and family who wore purple. I love them all and I am so touched by their support.

Today, I felt blessed.

Today, I feel that I am not alone.

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