GG was just 2 and a half when diagnosed with epilepsy. After a number of terrifying seizures, the EEG which was supposed to last for 24 hours, was over within an hour – they had seen enough. Our fears were proven, and our beautiful girl had a range of epileptic activity going on plus the addition of a rare brainwave pattern.
I can only describe the following months as being in a bubble. We did not take our eyes off our gorgeous GG who plodded on with life as if nothing different had happened. We spent our nights watching the video monitor, we spent a fortune on alarms and we trialled various new medications in our bid to stop this monster taking our over GG’s life. We stayed near to home, researched hospitals before we would travel, babysitters were hard to come by and we were always, forever watchful.
It took time, but we came out of the haze, we stabilised on medication that seemed to work and we focused on the some of the positives in life. GG continued to have the odd seizure, usually related to illness and a one off. Absence seizures and sleep seizures were a continual companion but in light of the threat of the ‘big ones’ (as they became known), they didn’t stop GG, and by default the rest of the family, from living life.
The summer that GG was 5, things changed again. Two clusters of seizures overnight resulted in yet more medication, more night time vigils and the introduction of emergency medication to be administered at home. This change involved everyone who helped look after GG, being trained to administer the meds. We took it in our stride, made the adjustments needed and carried on.
Over the next couple of years, we dared to hope that the epilepsy had subsided – maybe even gone forever, who knew! We continued to manage the absence and night time seizures but even through some nasty illnesses, the ‘big seizures’ did not re-appear. We even removed one of the epilepsy meds due to side effects, we took the emergency meds away – we hadn’t needed them in 2 years. We still watched GG on a video monitor at night and the alarms were always in place, but they never sounded. We dared to hope.
In fact, we even dared to take a flight on holiday earlier this year – our first in 6 years. We dared, as GGs parents, to take a much needed and long-awaited weekend away to celebrate a big birthday – leaving GG and her siblings with grandparents, safe in the knowledge all would be well. It hardly bares thinking about but just a week ago, we dared to climb a big hill, it was tough – we carried GG for parts, carried her buggy for others but we did it – a major and exhilarating milestone as a family. I can hardly breathe when I think about how far away we were from any medical help.
Then it struck again. A familiar activity in our family, watching the eldest swim in a gala. A straightforward family afternoon, which ended in hospital. A seizure, out of the blue, on the side of the pool. A further 7 within the next terrifying and heart-breaking 90 minutes. An ambulance ride, so many tests, an overnight stay without even any PJs. Our poor baby, attacked by this monster again and so brave and yet so confused by what has happened. The siblings left with grandparents so scared by what they have seen.
We are back home and back in the haze. Re-evaluating how we operate as a family. High alert status is resumed – especially as we increase the daily medications. GG is never out of our sight, we sleep next to her at night. Emergency meds are with us, everywhere we go. Always thinking about access to the nearest hospital. Cancelling all work plans to travel. The realisation that the planned holiday for February needs to be re-thought. GG’s long fought independence – the simplicity of playing in her room or out in the garden is curtailed. No more climbing hills in the middle of nowhere. But most of all the constant fear, the never knowing when it will hit again, but knowing for sure that we will never dare to hope again.