A woman holds a young child. Both are wearing purple shirts.

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 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.

Child has her hands held above her head by mother.
 
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Authored By: 
Farrah
Authored Date: 
03/2019