Remember the story from earlier on in the week, The story of a Mum being helped by another Mum (Kate) to support her son while he had an epileptic fit. Yes?
Well please meet Teagan, Teagan is cooper’s Mum. Cooper is the little man that has epilepsy. *Make sure you have your tissues. This is an inspirational, yet hard hitting read.
Message from Teagan:
There’s such a horrible stigma around epilepsy if more people realised its a brain disorder not a disease then children like my son wouldn’t be left to fight it by himself.
Here’s her story:
My son was born on the 14th July 2009. Weighing in at 7lb 12oz my little slice of heaven. A son. Cooper Jaxon Grant.
I smiled at him while I stroked his forehead and said to the midwife he’s really warm and she said no love that’s the warmth of real love…and how right she was.
When he was taken to get weighed his temperature was checked and it was 39.8 degrees.he was quickly rushed away to NICU where he stayed for 3 days. He had a blood infection contracted from me during my 28 hour labour.
He was released and we finally brought him home. All was perfect for 8 weeks until one morning I woke up and my darling boy was limp, I immediately rang an ambulance, while waiting for an ambulance he started shaking uncontrollably. My 9 week old was having a seizure.
By the time the ambulance got there he was limp again and they couldn’t seem to get him to respond so with sirens on we were whisked to the hospital.
At the hospital he was given an iv and fluids straight away the young paed that was on decided it was best to argue with a stressed worried mother and tell me there was nothing wrong with him.
They took his temp 3 times it was normal no one bothered to touch him until I screamed at a nurse get another thermometer she did Coopers temp was already 40.7 .
The doctor looked at his chart and my face and said tell me what happened? With tears flowing I started to tell him then son started seizing again he was given an anti epileptic ….fast forward 4 hours and there was results he was suffering from an ear infection that stemmed from the blood infection he had when he was born.
For the next 9 months we lived in perfect harmony.
Then.. he had 5 seizures in 55 mins. Before I knew it I was faced with the young paed again. This woman would be the death of me. I argued and argued in the middle of arguing Cooper had a tonic clonic seizure I was shoved from the room by the time I was let back in my son was asleep.The 8 months that followed were full of EEG’s and blood tests and more tests and hundreds of dollars in private doctor appointments.
January 2012 they finally came to the conclusion. He is an epileptic. my heart dropped what did this mean? what was going on what would his life be like???
Thousands of questions rolled through my head at a pace I couldn’t control.
Not only did he have one type he had 3Tonic clonic seizures, benign Rolandic epilepsy and juvenile spasms we are told that he will probably grow out of them but right now that probably doesn’t seem real and feels far away.
Some days are easy, sometimes weeks will pass by without a tonic clonic. Benign Rolandic happens when he’s had too much sleep he will often have a mini stroke in his sleep for those that say epileptics don’t seize during sleep .
He will often wake up during the night and tell me his face is squishy and it is poor kids face is squished up on one side. And only a small dose of rectal Valium will help him relax.
Hey mum hey mum heeeeyyy muuuuummm for most parents this is normal…for my son it’s a juvenile absence seizure almost like a computer re boot. He will tell me something stare in space for 10-15 seconds then start all over again it can happen 20 or seconds.
The look on people’s face when I say he’s an epileptic they take a step back or they are overcome with the thoughts of I’m glad it’s you not me.
Normal for me is me putting Valium into my 3 year olds bum.
Our life isn’t extraordinary nor is it ordinary this is our normal he has epilepsy but epilepsy doesn’t have him.
Every day I live in fear is this the day that he will be taken, is this the day he won’t open his eyes. Is this the time he wont wake up…SUDEP “sudden unexplained death in epilepsy” often runs through my head. Not many people know but epilepsy has more sufferers than breast cancer.
My reaction was simple ” ok then where to now” Bens reaction was ” oh alright” both Bens brothers are blind and albino so this is nothing out of the ordinary for him he simply takes it in his stride and hugs me.
Ben doesn’t realise it, but he keeps me grounded stops my mind from wondering in bad days and takes the reins when I need a break.
He once told me after a bad week ”You’re not giving up you’re just having a breather no one can look after him like you- but I’ll try my hardest babe”.
Sometimes coop will sleep for 24 hours or more and I will sit and watch him sleep most parents will watch their child sleeping and smile I watch my child’s face fight the sleep his body wants to go but his brain is exhausted
A doctor once told me that he believes everybody has epilepsy and it’s just the wrong signal that gets sent from the wrong part of the brain that sets it off. I don’t believe in a cure for epilepsy I believe in making changes to a diet.
I refuse to put my child on medication and zombiefy him. I believe in letting him grow up as normal as possible I believe in letting him know that no matter what happens or where he goes or what he has to go through I will be there with him every step of the way.
I am his fighter his voice his protector i’m his nurse im his dietitian I’m his healer and comforter but most importantly above all I’m his mum.
In my mind epilepsy was something that affected other people you know friends of friends.
Never thought it would be our child never thought the word fit or seizure would be a common word in our house
Never thought that Valium would have a special shelf in my fridge.
Never thought that seeing a pediatrician would give me a smile a a hug. Never thought that I could deal with this.
Never thought this would make me 1000 times more protective.
Never thought a bump on the head could mean more than a tear or two.
Never thought that epilepsy would make my family stronger never thought it would make me fight harder.
Never thought it would make me love him more.