I have always felt in some way, to some degree that I led a pretty blessed life. While my life has never been perfect (let’s face it who’s is!) things seemed to come quite easily for me. Things I have wanted to do and places I have wanted to go have come along without too much trouble. I’ve had experiences that not many people will get to have, like performing at the Sydney Olympics and NRL Rugby League Grand Finals and Super League World Nine’s Competitions. I got good jobs easily, I found a great man, got married and fell pregnant without too much trying which is a blessing in itself. I was healthy, my family and friends were healthy – in short I really had nothing to complain about, life was good.
This all changed in 2008. I was 27 and a new mum to a gorgeous 5 month old boy. My son wasn’t the easiest baby so at first parenthood didn’t come easily for us. I was struggling to find a way to join my old life together with my new life as a mum and trying to find a way to get along day to day. I was just starting feel like I had found my feet in this strange new world when on Anzac Day I woke in the middle of the night to ambulance officers walking into my bedroom. In the haze of confusion I remember hearing them talking about seizures and thinking how that doesn’t sound good – and then realising they were talking about me. A visit to the emergency room where they ran a few tests and told stories of how interesting it is how the brain works during a seizure, told it was probably just a one off thing and I was back home like nothing had happened.
Over the next couple of weeks conversations I had with my best friend got me thinking about strange episodes I had been having over the 18 months prior to this “one off seizure”. During these episodes I would feel like I was daydreaming only it was the same thing every time, like deja vu. It usually ended with me telling myself in my mind to stop it and I would “wake up” from my daydream, throw up and go about my day. These only ever happened when I was by myself and usually in the shower so nobody ever witnessed them. Not long after these started I found out I was pregnant so passed the vomiting off as morning sickness. During my pregnancy these episodes basically went away so I forgot about it and continued on my journey to parenthood.
I discussed all these things with my Dr who sent me off to see a neurologist. After only a short time in his office he gave me a diagnosis – Epilepsy. I was shocked. I didn’t really understand what this was, I didn’t know anyone that had it but from what I knew it wasn’t good. I was put on medication and was unable to drive for several months. Just like that I had my independence ripped away from me. What am I meant to do now? All the things I did before now seemed too scary or difficult. I couldn’t drive anywhere and all my friends and family had jobs so I was confined to my house all alone every day with a difficult baby that cried incessantly. My husband was wonderful and a fantastic help but he couldn’t be with me every day, he had to work too. I was plagued by thoughts of what might happen to my son if I were to have a seizure while looking after him. I used to put him in his pram and take the dog for a walk every morning through our quiet neighbourhood but became fearful of having a seizure and my son would be left alone in the street until someone eventually came to our aid. After several months of trying to make sense of it all and come to terms with my diagnosis I was able to start driving again. Slowly but surely things started looking up. My medication was working and I was seizure free, something that came easily for me unlike a lot of people who never will be. I had my independence back. I had found a new friend with a daughter the same age as my son who was more than happy to come and spend her days with us and take us places to get us out of the house. This complete stranger was a godsend to me during this time and is still a good friend. With this new friendship I was starting to feel like I was back to my old self and life started to be good again.
3 months had passed since my diagnosis when I noticed my now 8 month old baby doing strange things when I was changing his nappy. He would get a confused look on his face, like he didn’t know what was going on and he would not respond to anything I did, things that would normally make him smile or laugh received no response. It never really seemed to last too long but he would instantly fall asleep straight after, even if he had just woken up from a long nap. Everyone told me it was probably nothing, I was just being paranoid but mother’s intuition told me otherwise. It occurred to me that I was having seizures not realising what they were, maybe he was too. I knew with every ounce of my being that this is what was happening to my precious little baby even though Dr Google gave me no sufficient evidence to prove it. Nothing I read sounded 100% like what I witnessed but this did nothing to comfort me. So back to the Dr we went and were referred to our paediatrician. My Dr later admitted to me that all she could think during that visit was “God no, not both of them”.
Before we got to see the paediatrician I went in to check on my son not long after putting him down for a nap. I found him lying on his back, arms and legs out straight and stiff with his feet turned inwards on a 45 degree angle but sound asleep. A call to the paediatrician quickly saw us back in an ambulance on our way to emergency. We spent the next 2 hours watching our happy baby crawl all over the floor exploring these new surroundings like nothing had happened so we were sent home. A day or 2 later we raced back to emergency after one of his nappy changing episodes ended with my son turning blue and not breathing. We spent 2 days in hospital completely seizure free and were sent home with another diagnosis of epilepsy and a prescription for epilepsy medication. Half an hour after arriving home he had a seizure, typical!
My diagnosis and all the feelings that came with it quickly went out the window. My only focus was my son and getting him better. Unfortunately medication didn’t work for him quite as well as it did for me. We spent the next 4 months feeling helpless as we watched him have seizures, sometimes several times a day. We played with a cocktail of medication trying to find a combination that worked. With every new dose the seizures would change and we would have to come up with a new combination. We eventually found one though and we did get him to be seizure free. When we did we saw our little boy come back to life. Almost like a light bulb was switched on in his head. Even when he was having the worst of his seizures his Dr felt he was advanced for his age. Thankfully his seizures never delayed his development, he was a very happy healthy clever little boy despite his struggles. Once again, we felt blessed.
Aiden is 6 now I am proud to say that he has been seizure free since December 2008 and he is now completely medication free as well. I too am still seizure free so once again life is good. Even through this ordeal we can see that we have been blessed. We knew that things could be worse, some families deal with worse than what we did and some people will never achieve what we have with their diagnosis. During this time we even added to our family, another healthy little boy.
Once things settled down I started to wonder where this even came from. There was no history of epilepsy in my family and there was no cause found for either of us to have it. Epilepsy came into our lives so suddenly that I felt there had to be a reason for it. I felt that maybe part of my purpose in life was to try to turn this experience into something positive.
So I did. I contacted our local epilepsy organisation Epilepsy Queensland and started fundraising. At first in a small way by selling chocolates at the local markets and donating a portion of the profits and then selling merchandise as well. We took part in epilepsy awareness days like Purple Day – a worldwide initiative to educate people about epilepsy started by a 10 year old Canadian girl. Our son’s day care took part too with purple themed activities and wearing purple for a gold coin donation. The only problem was we couldn’t find anything age appropriate to explain to the children what it was all about.
My husband said that maybe I should write something which I laughed at. I sometimes have trouble forming sentences to make simple things make sense, how on earth would I write something for children to explain something as complex as epilepsy?
The idea played in my mind though for a while. It stayed in the back somewhere, quietly trying to come up with a way of making it possible. I’m a wannabe graphic designer so I already had digital images of animals and characters that I had drawn, all I really needed was a story. One day while trying to have an afternoon nap, the story I needed started to write itself in my head. As my mind went crazy with ideas it became abundantly clear there would be no nanna nap this day so I grabbed a pen and started to write. Just like that The Lion’s Secret was born!
The Lion’s Secret is a Children’s Book telling the story of a brave lion with Epilepsy and how he shares his secret about his condition with his friends. The book is self-published and distributed and has been rated for ages 3-10. I have sold copies all over the world, to hospitals, doctors, university libraries, teachers and day cares as well as families with children with epilepsy. It is also available for purchase from Epilepsy Victoria. My book has raised funds for Epilepsy Queensland and in less than a year of being in existence we had donated almost $300 from sales of the book. Not bad for a little lion with epilepsy!
Once the book was out there we created him a home at Purple Jungle Designs (lavender is the recognised colour for epilepsy and of course lions live in the jungle!) In the purple jungle we do a lot more than our book. We have a range of artwork in our Words of Art collection, we offer personalised canvases and party invitations for children using the characters from The Lion’s Secret as well as other designs, we take your art and turn it into puzzles or décor and we sell delicious designer candy which makes a great gift for any special occasion.
We are still in the process of getting up and running so at this stage the Purple Jungle is a home based business and I have to have a real job to make a living but I have big dreams. I feel that my book has the potential to help a lot of people and I am currently looking at the different options available to do this.