When Noel came into the world on July 1, 2004, all was normal; all was perfect. Our second child, our first girl, came into the world three weeks earlier than expected, but that’s her personality — ALWAYS ahead of everyone. It falls into every part of her being, she’s even two years ahead in school.
Fast-forward almost eight years to the day, the day our lives were changed forever — July 27, 2012. What should have been a fun outing for the girls and I, turned into a trip to the ER via ambulance with many unanswered questions. Why did Noel seem so sleepy all day? Why was she much more quiet than normal? Why did her eyes roll back in her head as she slumped out of the chair while getting a manicure? I was assured all the way through that it was a simple case of syncope (fainting), but it just didn’t seem right. Why did she continue to seem out of sorts?? So very, very tired. Why did this happen several times over a few days?
By early August we had taken Noel to the neurologist and he began testing. Her EEG was inconclusive, but her MRI was perfect. All the while things were just not right with our Noel. We wondered why did she shake when she passed out? Why did she stare off into space? Why couldn’t we get her attention even when we were right in front of her?
Now it’s the beginning of October and Noel has been admitted to CHOA-Scottish Rite on their neuroscience floor for a 48-hour video EEG, everything seemed fine. We never saw any of her “drama”, as her neurologist and I lovingly called it. But, her EEG did show abnormalities. Was her dream of becoming a Pediatric Neurosurgeon over so soon? What did this mean? Of course, she could/can be whatever she wants to be!!! For the first little while we chose to do nothing, even chose not to label what was happening, as it was a big, scary word. We started with the words seizure disorder. That didn’t sound too bad…
By February 2013 Noel is seeing an epileptologist. We no longer hide from the big, scary word. Noel has frontal lobe epilepsy with complex partial seizures. What does it mean? It means that while Noel has to take anti-seizure meds and a few precautions (like she MUST wear a helmet when riding a bike, but shouldn’t we all??!!) she is EXACTLY the same girl she was before (and since) July 27, 2012. She is still going to be a Pediatric Neurosurgeon and achieve whatever her heart desires.
So, how do you continue with a new version of your lives? With a little more attention and a lot of understanding and acceptance. She begins to realize she’s not some oddity, there are so many more just like her. She finds true self-acceptance, something with which you still struggle. She proudly declares, “I have epilepsy and that’s the way God made me!!!!” She lets you know, “I want to be a Pediatric Neurosurgeon, because I know there are people like me who have seizures, but from tumors, and I want to help them.” You thank God for helping you and helping dear Noel be the best she can be, epilepsy and all. And, maybe, just maybe, you find true acceptance.
But wait, you also realize you lost the daughter you had two years ago. Where has the child with the vibrant, laid-back personality gone?? You adjust to things moving slower. You accept this loss, because your daughter is here, she’s thriving, no more seizures. I know we are lucky, but I HATE what AED’s have taken from us!! I will fight for the chance for others to NEVER have to look at their child and ask, “Where are you?”