Today is the 10th Annual Emily Day.
Ten years ago today, I held my 2-year-old daughter as she had a seizure. I had no way of knowing it would be the last time I would see her smack her lips as if she were tasting something awful, hold her as her body grew tight and whisper calmly to her as her eyes watered and her heart raced. When it was over, she fell asleep on my shoulder.
Two days later, she would undergo a second round of surgery to remove what was left of a benign tumor in her brain. The neurosurgeon would also remove a significant amount of scar tissue, essentially leaving her with only 9% of her left temporal lobe.
It had been a long year and a half since she had her first seizure, prompting an emergency MRI at Children’s Hospital in Birmingham. The test revealed a walnut-sized tumor. She was immediately put on anti-seizure medication, which made her tired and irritable. Her neuro-oncologist assured us the tumor “wasn’t angry” and that we could wait to see how she reacted to the meds.
Turns out, her seizures could not be controlled medically. When her seizures broke through the meds, she had up to 10 a day. The right side of her face drooped. She began losing vocabulary. Her speech was slurred. She was sleepy all the time.
After months of monitoring and weeks of tests, her team advised surgery to remove the tumor. She had her first craniotomy in March 2005. By May, her seizures returned. We started the testing process all over again.
This time, there was no conclusive evidence more surgery would result in no seizures. Charles and I were left with this decision: accept our child would have a lifetime of meds and seizures or put her through a painful surgery and hope one day she could be med-free and seizure-free. We struggled mightily with that decision.
One sunny, breezy day in October, I took her to the playground in her stroller. I put her in the toddler swing and gave her a push. I was wiped out emotionally. I sat quietly on the bench next to the swing set, listening to the creak of the swing and the wind blowing through the trees. I looked up at the bright blue sky and watched the clouds move across it.
Suddenly, these words came to me: “Be still, and know that I am God.” I took a deep breath, and I looked over at Emily. Within seconds, she began to have a seizure. I scooped her out of the swing and held her close. I knew exactly what had to be done.
The second round of surgery was not easy. There were complications. Her sutures wouldn’t close properly. As a result, spinal fluid leaked from them and dripped down her chubby face. We spent three weeks in the hospital. She had two more surgeries. The last time I handed my screaming toddler over to the surgical team, I broke down in sobs. I screamed at her neurosurgeon, “You fix it this time, because I can’t do this anymore!”
The third time was the charm. We took her home the Wednesday before Thanksgiving. I’ve never been so grateful.
Today, she’s seizure-free. She is sassy, funny, talented and smart. She takes meds for anxiety and ADHD, but they don’t have near the negative effects anti-seizure meds would have. She has a learning disorder in reading comprehension, which means she has to work extra hard in school and will soon have a tutor. She has very little impulse control, which means she speaks and acts before she thinks. These things make middle school difficult, because being different in middle school is the last thing you want to be.
In our day-to-day life, I forget how lucky she is to only have ADHD and a reading disorder. I forget there was a chance she’d never talk – that her vision would be damaged – that she’d never be able to drive a car for fear of having a seizure behind the wheel.
And this morning … I actually forgot Emily Day. She had to remind me. So, I’m writing this blog post as proof that I remember.
I remember it all, baby girl.
I remember your pediatrician looking at me, saying “Oh, Jennifer. That’s a seizure.”
I remember the radiologist who wouldn’t meet our eyes as he informed us the neurologist was waiting for us in the clinic down the hall.
I remember how you slept in between me and your daddy every night for almost two years so we would know if you had a seizure.
I remember how your teacher at day care carried you on her hip all day because you were too sick and tired to play with your friends.
I remember your four-year-old brother being shuttled back and forth between friends’ houses while we took you to Birmingham for appointments.
I remember keeping you up all night so you would sleep during your MRIs.
I remember quitting my job when your seizures returned.
I remember you waking up from a nap after that second surgery, your pillow soaking wet from spinal fluid.
I remember holding you down on the exam table while you screamed as the surgical residents replaced your stitches in an effort to stop them from leaking.
I remember sleeping in the hospital bed with you every night for three weeks.
I remember you walking around our house when you finally came home, saying “I so happy be my house.”
I remember the day you took your last dose of medication and how relieved your daddy and I were when your seizures never came back.
Happy Emily Day, our brave, strong girl. We love you. Here’s to 10 more healthy years.