In celebration of Purple Day for Epilepsy, Brinae Smith shares her experience of parenting a son with this complex condition.
When I first heard of epilepsy, I did not know what it meant. When asked if I know what it is now, my honest answer would be, ‘not really’. Growing up I thought epilepsy was just people who wore a cool bracelet and would have fits. I wasn’t sure what caused them, or how to help, I just knew it couldn’t have been good.
Eighteen months ago, our son was involved in a serious motorbike accident and sustained a brain injury, two broken arms, two broken legs and facial fractures. Little did we know that after leaving hospital, we would endure more complications and have a lot more to learn.
I still remember getting a phone call from my husband saying our son had just collapsed. I was at work with a client when I received the call. I was at a job where you don’t want your clients knowing your personal life, but at this moment, I had no choice.
My husband hadn’t called an ambulance at this stage but panicked and called me first. Luckily, I had another phone and called an ambulance while he updated them with what was happening. The only way you can explain to someone what’s happened without them seeing is, “it’s like someone being electrocuted.”
Imagine hearing the noises and picturing this all without being able to help.
How you think you would react in the moment, compared to how you do react, is completely different. In the moment everything happens so fast, yet time goes so slow. Every second waiting for an ambulance feels like a lifetime and yet, when you think back now, it’s all just a blur.
I’m still coming to terms with having to deal with epilepsy, the triggers, the trial medication, the tests and of course not letting our confident little swimmer swim alone. The hospital has taught us how to medicate him and how to make other family members aware of possible triggers or signs.
Most importantly, we’ve had to learn how to be calm and control our emotions while ensuring that our son is safe, and monitoring the seizures and surroundings as best as possible. There is so much to learn and I don’t think I will ever know enough, however this is something we are all willing to accept as we grow and tackle this journey we call life.
If I had to explain how I’m coping, I’d be lying if I said everything was perfect. From the outside looking-in, everything seems amazing, but mitigating the dangers and the ‘what if’s’ each day can be extremely hard.
We have an amazing support network through our family and most of all Westmead Children’s Hospital. Whether it's orthopaedics, brain injury team or epilepsy team - they're always there for my 'little mummy freak out messages'.
Little things that I think are a big deal or am ashamed to ask are welcomed warmly, and they are always there to assure me that what I’m experiencing are all normal emotions and bumps in the road.
We’ve been lucky enough to go a few months without a clonic tonic - or violent, ‘grand mal’ - seizure but our little man could be having brief, ‘absent’ seizures all day and we wouldn’t have a clue. Sometimes we can tell this is happening by his behaviours or his not recollecting certain conversations, but how many seizures he’s actually having is something we will never know.
We are so blessed to still have our little man and will do whatever it takes to learn and share awareness for other families.
This isn’t the journey we chose, but it’s a hell of a journey to take.
