Seizure number thirteen made it official. Rose was four years and three months old. Her first febrile seizure was when she was eighteen months old. All her seizures thus far had been accompanied with illness and fever. This one was different. There was no fever. There was no illness.
Rose was eating a brownie while sitting at her place at the table. Her eight year old brother commented that her mouth was too full. I looked over to see Rose holding a napkin in front of her face. I pulled it down to see chocolate drool leaking from the side of her mouth. Her chin was quivering. I leaned Rose over to the side to remove the chewed up brownie from her mouth. By now her eyes were blinking. I carried her to the nearby couch and placed her on her side. She tried to sit back up and pointed to the bathroom.
I carried her there thinking she might need to vomit. Her arms went out stiff with her hands bent down at the wrists. Instead of entering the bathroom, I turned and carried her to my bedroom, the room with the phone. This was not the usual seizure.
I dialed her pediatrician’s number and got his partner, who was on call. I described what was happening to Rose. By this time her knees were bent up and her lips were blue. The doctor told me that if the seizure kept progressing that she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue. I was instructed to call an ambulance.
I remember responding, “They can’t find us.” His reply was to get her to a hospital, fast. I hung up the phone and picked up my blue, little girl. I carried her up the steps to the carport. As I strapped her into her seat, there was an explosive vomit. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seat belt and dragged her limp body across my thighs and beat on her back. Nothing happened.
We had a bag phone back then. I got it out, unzipped it and instructed her brother to hold it as high as possible to get better reception. I dialed 911. What was my emergency? Where was I? How old was the patient? There were too many questions. I had to describe where our driveway was because there was no street sign. I had to tell how to open our gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I was talking words, but my mind was praying, “Give her back. Give her back.”
Finally, I was being told how to help Rose. She was still and blue. “Put her on the floor of the van” the dispatcher said. “Lay her flat on her back” he instructed. “Start CPR” he ordered. As I was getting ready to follow more instructions, Rose took a deep breath. I was relieved to see the blue in her face fading. Now my prayer was, “Let her be whole.”
I finally took my eyes off of her to notice that it was raining. I looked over at her brother who standing as tall as he possibly could, holding the heavy bag phone over his head and shaking.
Then I heard a car approaching. There had been no siren. It was a friend from church who was an EMT: First Responder. As I started babbling about what had happened, he calmly said ”Go change your clothes, I’ll watch her.” For the first time, I noticed that I was covered in vomit. I was so relieved to have some help. I rushed back into the house to change my clothes and returned just as the ambulance and her father arrived.
Seizure Mama speaks to parents:
This event was an actualization of many of my recurring nightmares.
1. An emergency alone. No one to help me in my isolated location.
2. One of my children dying in my arms because I do not know how to save my own baby.
3. Calling 911 and having no one answer, or the person who answers does not understand what I need, where I am, etc.
Yes, all of that happened together like a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.
Yet, I will also remember the great relief I felt with Rose’s big breath and the familiar face of a friend coming to the rescue. That pure sense of gratefulness that I felt when I was no longer alone.
This was the big-bang-beginning of our journey.
The enemy finally had a name, Epilepsy.
Seizure Mama is born!
Seizure Mama and Rose 