What is your connection to epilepsy/seizures?
My daughter Lily was diagnosed with Epilepsy after getting hit in the head by a soccer ball while playing soccer almost 10 years ago when she was 5 years old. She had one seizure, and then another. At the time, I didn’t know what was happening. Luckily the life light medic mom sitting next to me did and she jumped right into action. Only later after an MRI, CT Scan, EEG and meeting with our pediatrician did we figure out that all the things I had mentioned since she was a newborn were actually seizures.
Tell us a little bit about your journey.
In 10 years, we’ve spent countless weeks in the hospital. Have given out daughter as many as 22 pills per day. Have endured nearly 2 years of difficult home schooling. We’ve had a seizure alert dog that after 2 years sadly died of a seizure itself in front of my daughter. We’ve experienced a huge mismanagement of her medication, including nearly a year of misdosing by the pharmacist, which has caused our daughter to have ongoing issues with medications of all kinds. We have found that her seizures are now cycling around puberty and becoming worse as she gets older. She received her wish from Make A Wish in 2011 when things were really difficult. We attended the first World Epilepsy Day at Disneyland, which I think was one of the most paramount experience for our family and our daughter. It gave her the chance to see the spectrum of conditions and children and adults who also face epilepsy each day.
What is a typical day like for you?
Lily is now a freshman in high school. She was diagnosed in the first month of Kindergarten. Our typical day now consists of Lily waking up very early. She has much difficulty sleeping due to her medication. She often has nighttime seizures or waking seizures. We have found that low blood sugar, being too hot or too cold, being tired, being stressed, are all triggers for her. We use her cell phone a great deal to communicate with her and help her track how she is feeling and what signs (auras, stomach ache, head ache, etc) she is feeling throughout her day to try to pinpoint new triggers of her seizures. We have been trying to eliminate her menses as we have found her seizures cluster around ovulation and her cycle. Lily is in a very competitive performing arts school. She is a dare devil, confident, outspoken, sassy little thing. More than anything, her condition has made her the resilient, kind, compassionate, outspoken person she is. She has NO fear. She takes everything in stride. As she says herself, she just rolls with the punches.
What support do you have??
Some. Not a ton. We find support in close friendships. In the community of people in our lives who show Lily kindness and compassion and encourage her to continue in all she dreams of doing. We’ve definitely learned over the last year to just let her live her life and that no matter what she is doing, seizures will happen. Last year we were told by her Neuro that he didn’t expect her seizures to ever go away. That this is a lifelong condition in his opinion. That we should loosen the reigns a bit. She should go to Disneyworld, like she’d been wanting to for years. Ride the rides. Do all that she wants. Live her life and take chances.
So she’s now very involved. She’s doing things she loves. She even learned to surf in Hawaii in November and jumped off a waterfall into the ocean.
What would you like others to know?
Epilepsy is different for EVERY SINGLE PERSON. Not one person I’ve met has their experience been the same. It is a spectrum disorder and a stealth disorder. You cannot look at many people with epilepsy and see how it affects their life. Not all seizures are drop seizures (grand mal) where you hit the ground. And all seizures be they absent, tonic clonic, etc are all serious.
What has or would make a difference for you?
I joke that I haven’t slept a full night since Lily’s seizure dog died. I dream of being able to sleep without worry. At 13 Lily decided she didn’t like having a video monitor in her room. Support and kindness is what matters most to us.
Lily is a champ at overcoming obstacles, but teachers, kids, people being unkind is what gets her down the most. She doesn’t ever ask why me. That is not her personality. But she does feel excluded by people who are scared of her seizures and don’t invite her to things because of them. She has few sleepovers. She has one very close best friend who she met just weeks before being diagnosed who has been there for everything. I am so grateful for Brensley and her Mom and brother who have become like family over the years. We were even able to surprise Lily and bring her best friend Lily to Hawaii in November.
I am so very proud of my kid and how much she fights through with the kind of character and maturity that you’d hardly expect from an adult. She volunteers on many boards and with many nonprofits. She speaks on behalf of other Make A Wish children. She even got accepted and scholarship to the art school she wants to go to (as a freshman) and is currently nominated for the 3rd time as Military Child of the Year for the entire nation.