Make A Difference / The Power of Stories / What Epilepsy Means for Farrah
Farrah of Georgia, whose young daughter lives with two types of epilepsy, shares what epilepsy means for her family.
The other day I was asked, "So what is epilepsy exactly? Is it just seizures?" I mumbled something about it being more than that. The truth is epilepsy is different for each person, so I can't tell you a good definition that fits everyone.
But I can tell you what epilepsy is for us.
It's having a game plan before any trip, even to the grocery store.
It's never ever leaving the maintenance or rescue medications behind.
It's checking 837 times a day for a fever. It's the dread you feel when your child has a fever and you know what's coming next.
It's asking her 20,000 times a day if she's ok.
It's speech therapy, feeding therapy, and physical therapy.
It's a care team that averages 10 doctors.
It's watching every time she eats or drinks so she doesn't choke. It's feeding tubes.
It's a medical notebook that's bigger than any I had in college.
It's only having three people who can watch her, because they all need to be trained.
It's co-sleeping. It's checking on her all night.
It's falling constantly or not being able to talk. It's paralysis that can last for hours.
But it's also unconditional love.
It's having a great team of doctors who truly care for her.
It's a thousand kisses a day. It's dance parties. It's big hugs.
It's when she asks you if you are ok when you cough because she gets asked.
It's celebrations when she hits milestones. It's being her safe place. It's a strong support system.
It's letting her know she's different and that's ok.
It's watching her approach life with 100% joy.
It's being asked every day how she is doing, sometimes by complete strangers.
It's a testimony.
It's special. And it's a whole lot of purple.
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