Epilepsy Awareness Day - Epilepsy and Us.

Life was pretty much normal
until one morning Jai was 4 years old eating breakfast before nursery Eiley was a baby. As I sat across the table I looked up to talk to Jai, instantly I knew what I was seeing. I had seen 100's of seizures at work and knew he was in a seizure. Our world didn't crumble nor fall apart not too sure why maybe the fact between us we had over 20 years’ experience in the care sector. We set about getting a diagnosis and supporting Jai we were given an amazing consultant who still supports us 5 years later. Jai and Eiley grew up surrounded by epilepsy
and for Eiley and then Logan born when Jai was 6 epilepsy remained part of life and accepted it. Jai even wrote a piece of work about his epilepsy and became proud of having it wearing dog tags.

Then epilepsy challenged us all with regular seizures blue lights into hospital, extended seizures, things became scary for everyone with a 5 day stay in hospital after a are rare reaction to his medication his epilepsy seemed to get control of all of us.Jai became fearful and anxious at school surrounding his epilepsy I decided to give up work as he was in and out of A&E and I was called to school at least 3 times a week I had to be there for him and also his siblings who were witnessing more than any child should. Eiley decided from a young age that she wanted to become a Doctor or nurse to help Jai and make him better. She is a great support for Jai and talks to him when in a seizure and calls for us if we are in another room. Jai's epilepsy has evolved he used to have absence seizures now he has many more, tonic seizures when unwell, complex partial, focal, absence and more recently he has started having nocturnal seizures. As a Mum this is the scariest we sorted out an anti-suffocation pillow to reduce the risks of SUDEP (Sudden Unexpected Death in Epilepsy) we didn't sleep properly each night for ages worried about him. I have to say epilepsy effects all of us when out on family trips, holidays, meals out we watch for his triggers (which are vast) to reduce the risk of a seizure and often when he has a seizure and we have to stop what we are doing Eiley and Logan get upset understandably. That’s where Granny comes into place she comes out with us on trips days and we even drag her on holiday with us! I made this promise to Jai when he was young "Nothing will stand in your way in life, if we need to I will hold your hand and smash through things in your path"

The scariest moment of our lives!

Jai was almost 9 years old and was in a swimming lesson everyone knew he was epileptic and the life guards were always aware where he was. His swimming teacher was amazing and watched him
closely, as he swam to the edge of the pool I saw him go under then saw 2 swimming teachers dive in the water I have never ran so fast in my life to get to him. The "CODE BLUE" alarm was set off and the pool cleared when I got to the pool his teacher had his head above the water and life guards were in the water
trying to support him, as I ran past I saw the look on his sister Eiley's face the fear will haunt me forever. They dragged him from the pool as we were watched by terrified children and parents Jai took forever to come round that’s what it felt like actually it was only a few minutes but time stood still. I scooped him up as soon as I could and carried him to the first aid room still to this day I am not sure how I held his weight I was like jelly shaking and he was so heavy. He was ok and recovered well was checked over and we were told about dry drowning, thanks to his teacher and staff for their quick response’s. While getting him dressed it dawned on me Eiley she had witnessed it all my god the poor thing must be terrified I stood and watched her finish her lesson giving her thumbs up whenever she looked me. This is now one of the proudest
moments of my life. The swimming teacher told me while all this was happening Eiley remained calm and a boy much older than her had said to her "That boy is dying" instead of panicking she turned to him and said in a calm voice "Don't be so silly he is having a seizure he has epilepsy he's my brother" she went on to
explain a few things to him about epilepsy. She was 5 at the time we had always
been honest with her and told her not to fear epilepsy, it had worked. She said after the only thing she was scared of was the code blue noise and the children screaming. Jai had some time off swimming and true to his word of not letting epilepsy stop him he returned to his beloved swimming. He was calm and comfortable me I am still a nervous wreck I watch him each week and with any whiff he may have a seizure I keep him out of the pool. He has had another seizure since this but his teacher saw the early signs and got him out of the pool onto dry side. We could not thank the staff enough they saved our sons life!

People have asked us as parents why we allow him to swim as it is a risk! Jai is 9 years old can make
some decisions for himself he has ASD and struggles with many things in his life swimming is his comfortable place and he is amazing at it. We call epilepsy the E MONSTER we don't want it to control Jai nor our lives. We gave him the choice to not return and he said "Why should I?" that made me realized yes why should he be stopped from doing anything in life as long as all risks are assessed and he wants to do it who am I to stand in his way?

Jai is an unbelievable boy he has courage and strength, he will have regular seizures at school have a rest
and get back on. We are a positive family and epilepsy has taken its toll on us over the years but we always find a light at the end of the tunnel, we have to if Jai can we certainly can. He says the bonus of having epilepsy he gets to have more time off school and when he has blood tests he gets a toy! On national
Epilepsy Day he will be challenged to his limits. One main trigger is anxiety we need to travel early in the morning to Kings College in London on a busy train surrounded by people he will find it hard and due to his ASD will be anxious it will take every piece of him to do this trip and we know he will be exhausted.
Something simple as a trip to London to most children would be exciting and fun. It’s taken weeks of planning and preparation behind the scenes not only due to his ASD but because the anxiety WILL cause a seizure. He is feeling good at the moment about it but is very aware of his epilepsy and what OTHERS think. 

Epilepsy Nursing Team Kent

https://www.epilepsy.org.uk/

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