I have a child who has epilepsy and only until recently that I have noticed the differences between her and other children. Living with a child with epilepsy just adds another layer of concern as they may have a seizure and hurt themselves at any time. That is the simple answer.
You can check out my story about living with a child with epilepsy here:
Up until recently, living with a child with epilepsy hasn’t caused too much drama on a day to day basis within our family unit. However, due to her lack of understanding and weak memory that I have been watching her more lately. She tunes out often (this can simply be a teenage thing and may have nothing to do with epilepsy). When someone has absent seizures (a seizure where they appear to be staring into space for a little while) means you forget what has just occurred and can’t concentrate for long periods of time.
I am concerned there is more to her story and as her mum, I need to be her voice and protect her until she tells me to bugger off. It is time we saw a new specialist and get some answers to my new questions.
Here is the little story I wrote a few years ago. Hope you like it.
I AM JUST LIKE YOU…..
Holly is 9 years old and her best friend is Lexie. They have been best friends for 3 years and do everything together. Holly and Lexie love to make up dances to music. They love to pretend they are teachers at school telling all the students what needs to be learnt. They love to ride their bikes around the neighbourhood collecting flowers for their mums. They share everything.
Holly has one secret that she is afraid to share with her best friend Lexie. Holly has epilepsy. Epilepsy is when part of the brain does not communicate properly with other parts of the brain and when this happens it can cause Holly’s body to have a seizure. A seizure causes the body to make unusual movements and causes Holly to make some unusual noises. Holly is not afraid of having epilepsy but she worries what other people might think when they hear the weird noises and see her body shake uncontrollably.
“Why can’t I be just like everyone else,” Holly asked her mum one day as they sat in the car on the way to school.
“You are just like everyone else Holly,” replied Mum.
“I don’t know anyone else who has to have medicine every day to stop their body from behaving funny.”
“Does that worry you Holly?” asked Mum.
“It does Mum. I don’t remember what happens when I have a seizure. I don’t want to be different to my friends. I want to be just the same.”
Holly’s family had seen her have a seizure but no one else as she hadn’t had many. However this didn’t stop Holly worrying that if Lexie was around when she had a seizure she would be scared and not like her anymore.
“Maybe we should sit down with Lexie and explain what epilepsy is so she will understand what to do if you have a seizure.”
“But Mum, what if Lexie doesn’t want to be my best friend anymore?”
Mum cuddled Holly and said, “You may have epilepsy but you are just like all your friends. You are kind and sweet and I know you have nothing to worry about. Your friends will love you just the way you are.”
Holly knew it was time to share her secret with Lexie. The longer she waited, the more worried she felt. Holly didn’t like feeling worried.
The next day when Holly and Lexie were playing together after school, Holly decided the time was prefect to tell her friend about having epilepsy.
Lexie had so many questions and never looked scared about having a best friend who had epilepsy.
“Why do you have epilepsy?” asked Lexie.
“I don’t know. I was born with it,” replied Holly.
“Can I catch it from you like you can catch a cold?”
“No,” giggled Holly.
“Does a seizure hurt?” asked Lexie.
“I don’t think so. I don’t remember them. After the seizure is over I feel very tired and sometimes a little sick in the tummy. Sometimes I even cry because I am confused about what has happened. But I am not sore after a seizure.”
“Can I help you if you are having a seizure?”
“Yes, you can move things out of my way so I don’t hurt myself like chairs or toys. And you should get an adult straight away,” replied Holly.
“How long does it last?” asked Lexie.
“Not long, just a minute or two.”
“Do you need to go to hospital when you have a seizure?”
“Sometimes I might but most times I am ok. Usually all I need is a hug and to have a sleep.”
Lexie wasn’t scared that her friend had epilepsy. In fact she thought Holly was brave and it made her love her best friend even more.
Holly never worried about having a seizure in front of her friends again.
I have epilepsy but I am just like everyone else she thought.