Epilepsy Arrives

Story #3: The Big One

Seizure number thirteen was different. Rose was four years and three months old. Her first febrile seizure had occurred 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. I 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 said if the seizure kept progressing, she may stop breathing. Her torso was now tense and writhing. She was in a twisting knot and turning blue.
When the doctor instructed me to call an ambulance.I remember responding, “They can’t find us.” His emphatic reply was, “Get her to a hospital.” I hung up the phone and picked up my blue, baby girl. I carried her up the steps to the carport. As I strapped her into her seat, she vomited explosively. Then she slumped over and became still. I thought she had aspirated vomit and couldn’t breathe. I unbuckled her seatbelt 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 locked gate to get into the driveway. In the country, out in the woods, no address, no neighbors. I was talking in words, but my mind was praying, “Give her back. Give her back.”
Finally, the 911 operator began telling me 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 her to notice it was raining. I looked at her brother 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.” 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 Rose’s father arrived.

Seizure Mama speaks to parents:

This event was an actualization of many recurring nightmares.
1. An emergency alone. No one to help me in my isolated location.
2. One of my children dying in my arms. My not knowing how to save my own baby.
3. Calling 911 and having no one answer. Or the answerer did not understand what I needed, where I was, etc.

Yes, this event was a cluster of calamities from my darkest dreams. I will never forget that helpless and hopeless feeling.

Yet I also remember my great relief when I saw Rose’s big breath,the familiar face of a friend coming to the rescue, and my pure relief and gratitude when I was no longer alone.

This was the big-bang-beginning of our journey.

The enemy finally had a name: Epilepsy.

Author: Flower Roberts

seizuremamaandrose.org

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