The Seizure Cycle

The drug roulette regiment made everything worse. Rose was not Rose before a seizure or after a seizure. She was lethargic, floppy and dopey. She moved from her bed to a chair to another chair and back to her bed. The seizures came with us wherever we went. She seized in restaurants, at birthday parties, at Brownies, in the yard, watching television, in Walmart shopping for a helmet, at family reunions and even in swimming pools.
We took a plastic Adirondak chair with us on outings. The chair reclined slightly, so she could seize in it without falling out. Every party was BYOC (bring your own chair). The seizure bag went with us everywhere. We evaluated the risks of each outing. Should we go eat at this restaurant? No, it would be too hard to carry her out through the gift shop. She we go to a ballgame? No, seizures in bleachers is too dangerous. Should we go? No. By this point, we basically stayed home waiting for the next seizure. I really wanted to buy a little wheelchair, so we could go places, but was advised against it by other family members. She would look handicapped. She would feel handicapped. Yes, but she would be safe.
We walked everywhere attached to her. A fall could come at any second. We went up and down our stairs as a unit, so she would not fall. We called this method ‘stair pairs.’ When no one was in the room with Rose, the person in charge of her would whistle two notes and she would echo the two notes back. We whistled about every three minutes. It got to be so much of a habit that I would catch myself whistling notes when she was not with me. She slept with me during these terrible months. Sometimes she would whistle in her sleep. We whistled so we would not have to keep calling her name. We referred to this as ‘echo whistling.’ If she did not repeat our two notes, we would call her name. If she did not answer, she would rush to find her. Most of the time she was too busy to answer, but sometimes she was unconscious. It was these times I would always feel guilty about leaving her alone. Negligent for three minutes.
Take a chair everywhere, echo whistling and stair pairs. This is how we kept her safe as the seizures took over our lives.

Author: Flower Roberts

I am a garden blogger and a mother. This blog is about my daughter Rose and her triumph over epilepsy. We are in the process of completing a book, Watching Rose Rise. We need folks who understand life with seizures to give us some feedback. Rose is off at college right now so I, Flower, am running the blog PLEASE come and join us. We want to get this right.

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s