In November 2013 my world was changed forever when I was lucky enough to join this very special motherhood club with the birth of my first son, William. We had some minor challenges (what first time mum doesn't?) but William was a healthy and happy baby who loved his food but not his sleep.
At about 15 months that slowly started to change. William started childcare, as I returned to work and everything started to go downhill. William was becoming increasingly irritable and upset. He seemed to be falling over a lot and his balance did not seem as steady as his peers. I went to a number of doctors who waved me off, telling me everything was normal and William was just adjusting to childcare. My instincts screamed that this couldn't possibly be normal, but I continued on hoping against hope that they were actually right.
When we finally received our Epilepsy diagnosis I was hardly surprised. In fact I was relieved after a couple of months of going between doctors I absolutely knew something wasn't right, even if I had tried to convince myself otherwise. Epilepsy had never touched my life, in all honesty I had hardly even heard of it. Epilepsy is the most common serious brain disorder worldwide affecting people of all ages. 250,000 people are currently living with Epilepsy in Australia and 4% of our Australian population will experience Epilepsy at some stage in their lives.
In my first meeting with the doctor who eventually gave us our diagnosis they definitely underplayed the situation. We were told that it probably just meant William would need to take some daily medications to control the seizures. I now know that about one third of the people suffering from Epilepsy are unable to gain freedom from the seizures, despite medication. We struggled to control William’s seizures for 12 very long and very hard months, that I will never forget for all the wrong reasons. We are now over sixteen months seizure free and not a day goes by that we are not grateful beyond words for this.
Epilepsy is a lot more than just the seizures that you see on the surface. In our situation it has also impacted every aspect of William’s development, meaning William has to work three times as hard to achieve what comes naturally to a lot of his peers. On top of this the medications that allow us to live our life seizure free have their own very long list of side effects which also have to be managed. You may not always see it but not a lot comes easy for us and there is a lot of hard work from both William and myself behind the scenes. Despite the things stacked against us William is giving life his all, every single day and we couldn’t be prouder of him.
There are no words adequate to convey the feelings of watching your child have seizure after seizure continually every single day and be unable to stop it. At the height of William’s Epilepsy he was having a cluster of seizures up to 13 times every single day. Every night as William would go to sleep I would promise him and myself that the next day I would get answers.
It’s a common misconception that a seizure is when someone falls to the ground, losing consciousness and convulses. In reality there are about forty different types of Epilepsy with seizures that present differently. That person that you think is rude because they are ignoring you or seem to lose concentration and blankly stare into space – they could be having a seizure.
We worked our way through numerous medications, vitamins, high course steroids and the ketogenic diet before we found our winning medication combination. At its peak my not even two year old baby was on a total of 6 different medications and I was forced to pump syringe after syringe of medicine down his throat twice a day as he protested every one. Before this entered our lives I didn't even like to give him panadol but we had no choice we needed to stop the seizures by any means possible.
While we have been through some of the darkest times of our lives trying to get Williams seizures under control we have come out the other side. Things may not always be easy but the best things in life never are and William is more than worth it. William is now happier, laughing on a daily basis and more often than not sleeping at night. As a family we have learnt to slow down, live in the present and enjoy the more simple pleasures in life that we will never take for granted again.
I am beyond proud of both my two boys and feel so lucky to be able to call myself their mother. I have the same hopes and dreams for both my boys as all parents have for their children: Acceptance, Love and Happiness. Whatever it takes to achieve this for both our boys is what we will do and we will not stop!
There continues to be a stigma attached to Epilepsy and a fundamental lack of understanding. “More Than Epilepsy” is an Instagram and Facebook community to talk openly and honestly about Epilepsy. A positive space of hope to inspire anyone going through a tough time. A supportive place for those whose lives have been touched by Epilepsy. A judgement free zone for people to learn the facts and ask questions. A community to connect with each other and make our world a better, more accepting place for the many people living with Epilepsy. I will share our journey in the hope it may help support and educate. Epilepsy can interrupt your life at any point. Help me bring Epilepsy into the spotlight for all the current and future brave Epilepsy Warriors – you never know when it could touch someone you love.
I am your average Melbourne Mama trying to build the best life I can for my two boys. I am currently on maternity leave from my job as a Commercial Manager. I love brunching, shopping, chocolate, wine and musical theatre. I also have a borderline unhealthy reliance on coffee to get me through my day since both my boys have not been blessed with the sleeping gene. I am an organised, perfectionist, with a penchant for lists, whose life has been thrown into more than a little chaos by adding the title of Motherhood to my resume. That being said it is the absolute best (and hardest) thing I have ever done!
Children: Two boys – William 3 yrs and Mitchell 1 yr
Motherhood in 5 words: Hardest and best thing ever
Fav family-friendly place: Werribee Open Range Zoo and Myuna Farm.
Coffee order: Cappuccino (Large) – anywhere from 0-2 sugars usually dependant on how much sleep I have had the previous night!
Community: More Than Epilepsy
A place of support, acceptance and love for people who have had their life impacted by Epilepsy. A place to raise awareness for Epilepsy and a place to educate everyone about the facts of Epilepsy.
This is a place where you can connect with Melbourne mothers to share the good, the bad and the topics that we don't talk about but really need to.
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The information in this story is a unique and personal reflection of the writer's experience. If you have any specific questions about any medical matter you should consult your doctor or other professional healthcare provider. If you think you may be suffering from any medical condition you should seek immediate medical attention. You should never delay seeking medical advice, disregard medical advice, or discontinue medical treatment because of information on this website.