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.
A story children can understand
image credit
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.
Best friends for life
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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.
Linking up With Some Grace & The List
This is a great story.
I can imagine that epilepsy would be hard (particularly as a mum). I have had a few adults in my life with epilepsy. It’s a tricky one but as long as the people around them are aware they all seem to live well within their normal …
That’s very true Leanne. Most of the time we actually forget and her life is pretty normal
What a cool story! Have you considered making it an ebook? I bet many people would benefit from it!
Amy @ HandbagMafia recently posted…Driving: The Code of the Road
Thanks Amy. I have but haven’t taken the next step really … Not sure what to do first
It’s tough having a child with medical issues. One of my best friends has epilepsy and has to take good care of herself to ensure that she doesn’t get too tired or run down. Her parents didn’t realise that she had epilepsy until she was in her early teens, although her mum was a nurse.
My 3 year old has autism, and epilepsy commonly develops in asd kids at the onset of puberty, so I will always be on the look out for it I suppose.
It’s a great little story that you’ve written. I am thinking of writing a story for kids about autism..
Dani @ sand has no home recently posted…Roads of Words
That’s a great idea Dani. This same child is on the spectrum too.. It’s challenging but there are worst things out there
This is very helpful and good to see your little story too. My granddaughter was 15 when her ‘absences’ and ‘tuning out’ were finally diagnosed as epilepsy ( a relief initially to have an answer) but she has found it a challenge to continue taking the meds because of how they make her feel. Nevertheless she is aware that she must and also be aware of bright strobing lights and getting overly tired. I wish your daughter all the best. The story is awesome. Denyse
Denyse recently posted…Make Today Count! 191/365.
Thanks Denyse. As they get older it gets harder and the challenges greater. Hope your granddaughter is OK.
I really found this insightful. Just today I was listening to a 15 yo girl who lives with epilepsy and we heard about her difficulties, short term memory loss and how she needs help with some of the tasks we take for granted. You are a legend I would be happy to have in my corner should the need ever arise. Keep being there and asking your questions and getting the answers you need. Mel xx thanks for sharing xx
Thanks Mel. We are trying but it is getting harder and that’s because of the memory and frustration. This is why I drink wine sometimes
Adults who have epilepsy have it tough enough let alone kids, especially when they just want to be the same as their friends. This story would be so helpful for other kids, their families and friends to take about epilepsy a little more openly.
Grace recently posted…FYBF – Persistence and Portuguese custard tarts
Thanks Grace… I will continue pursuing it