On March 26th, we participated in an epilepsy awareness effort called Purple Day. Purple Day began in 2008 when a girl named Cassidy Megan had an idea to wear purple in an effort to raise awareness about epilepsy. Megan had struggled with epilepsy herself which is why she wanted to educate people about epilepsy, she hoped to debunk epilepsy myths and she simply wanted to start a conversation about epilepsy. It started out as a grassroots movement, but quickly turned into an international day of epilepsy recognition.
Since epilepsy affects Lola’s life, we wanted to participate and we were blown away by the overwhelming amount of support we received! Friends, family and strangers from all over the country (and in Costa Rica!) wore their purple to help spread epilepsy awareness. I wanted to extend our reach as far as we could. I needed people to put a face with epilepsy. And that face was Lola’s.
I wish Lola was not a conduit for epilepsy, but that’s the life she was given. And rather than wallow in her struggles, we have chosen to educate others. We asked our family and friends to wear purple on March 26th and we created a hashtag #purpleforlola. The response on Facebook and Instagram was nothing short of astounding. But it wasn’t about Lola (although her support system is simply the best), it was about all of her friends who battle epilepsy and it was about the 65 million people living with epilepsy. People need to understand that epilepsy affects all sorts of people and in many different ways.
Seizures are not necessarily how they are depicted on television or in film. Lola doesn’t violently shake on the ground while foaming at the mouth. I realize for the sake of conveying obvious symptoms, grand mal seizures are generally depicted through media. Yet Lola’s seizures are quite benign, in fact, we are often unsure if she’s seizing or not. Epilepsy affects lives each and every day — it affects our life each and every day. We try not to let epilepsy rule our household, but it has managed to wedge its way into our daily existence. There are always medications to be administered, appointments to be kept, tests to be scheduled, decisions to be made and most importantly, movements to look out for. And shockingly enough, we are among the lucky. There are countless epilepsy sufferers with zero seizure control, there are people who have tried 20 different anti-epileptic medications only to have them all fail, there are parents who have to make the ungodly decision to have part of their baby’s brain removed just to stop the seizures. We are among the lucky indeed.
We believe Lola is still battling a type of epilepsy called partial complex seizures, but the only way we’ll know for certain is by having her undergo a video EEG (VEEG). In fact, we will be at Riley Hospital for Children over the next two days because Lola is having a 48 hour VEEG. It’s going to be a long couple of days, but we have to find out what’s going in her little brain. Regardless of what the VEEG determines, we have made the difficult decision to wean Lola off of an anti-epileptic drug called Keppra (she’ll remain on another anti-epileptic drug called Trileptal). You may remember, Keppra was introduced last August when her seizures returned. She has never responded well to Keppra (anger, agitation, temper tantrums) so after many, many lengthy conversations, we decided to begin the wean. Of course, this was done with the oversight of her neurologist. It will take seven weeks for the wean to be complete, but sadly Lola is clearly having withdrawal side effects and it’s difficult to watch — especially when she can’t verbalize how she is feeling. But as with anything epilepsy related, these are decisions we are forced to make. Decisions that we never envisioned we’d be making when we brought our little girl into the world. We just want to do what’s right for Lola. She’s our everything.
We thank each and every person who helped us make Purple Day a success. We thank you for taking the time out of your day to support Lola and our family, but more importantly — we thank you for helping us raise awareness about epilepsy.
If you’d like to learn more about epilepsy, please visit: www.epilepsy.com.