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 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 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.
Today, I feel that I am not alone.