Parenting is often described as the toughest job in the world, but when epilepsy becomes a part of the equation, it transforms into a whole new challenge. Kelly, a mother to two children with epilepsy, shares her heartfelt journey of navigating the complexities, fears, and triumphs that come with raising children with this condition.
‘Nothing could ever have prepared me for what it was like to parent children with Epilepsy. The constant juggle, the constant anxiety, the constant want to fix everything and make it all better. Make everything “normal” again. The constant worry of when the next seizure is going to happen, it’s the first thing you think about when you wake up in the morning and the last thing you think about before you go to sleep. That’s on the nights you do sleep!
You learn very quickly that you’re not just mum anymore, overnight you become, nurse, carer, their pillar of strength and their biggest advocate. Epilepsy consumes every single day, even if it’s a “good day” it’s still there it doesn’t disappear, it’s just hanging around waiting to rear its ugly head.
Parenting is the toughest job in the world but throw epilepsy into the mix and it’s a totally different ball game. Always having to cancel plans at last minute, feeling sick to your stomach every-time the phone rings and you see it’s the school calling, having the overwhelming panic of if your get there in time to comfort them before the flood gates open after their seizure and the only person they want is their Mum or Dad.
It’s lonely, it feels at times never ending and like no one could possibly understand the challenges your little family face daily or why you constantly spread awareness because you want nothing more than people to just understand.
But what epilepsy has done, is show me a strength I never knew I possessed. It’s shown me what resilient, compassionate and accepting children I have and how together we make sure they reach their full potential in whatever they do. No dream is too big. Love and laughter gets us through the bad days. Some days when we’ve had a day where we haven’t had to think about epilepsy all day and we can enjoy the simplicity’s of being parents, like when your watching them score a goal or complete a piece of homework that they have spent ages on, those are the best days. It makes me realise that they may have Epilepsy, but it doesn’t define them.'
Through the challenges and uncertainties, Kelly has discovered a strength within herself that she never knew existed. She has witnessed the resilience, compassion, and acceptance in her children, showing that epilepsy may be a part of their lives, but it does not define them. Love and laughter become their pillars of support on the tough days, while the simple joys of watching their children succeed remind them that epilepsy does not limit their potential. As Kelly aptly puts it, 'Epilepsy doesn’t come with a manual, but it gives you perspective through the experiences you face and a lot can be said for that.'
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