Its been six months since BB had her first seizure. I remember watching my smallest turn blue and convulse and I genuinely thought I was losing her. The horror of not knowing what was happening to my baby was insurmountable. Tears spring to my eyes as the memory surfaces of the fear that grabbed hold of my heart when the fit controlled her.
When we were first diagnosed with epilepsy I felt relief flood through me as at least we had a name. She was recognised with a condition, and a condition we could treat.
Yet in the first instance I questioned how comfortable I was medicating my daughter twice a day. Whilst I fretted and doubted, my little girl had a cluster seizure, the worse she had ever endured, back in hospital once more I learnt quickly to ignore google and trust modern science.
I don’t blog, or talk much about my daughters epilepsy. Primarily because since her medication began it is under control. From my research into the condition we are one of the lucky ones who got diagnosed, get given the right drugs and get to live a normal life.
BB is perfect, she still has frequent absences, where she seems to vacate herself and fly to Neverland for a bit. I’d like to see them end, as like any mother, I don’t need more reasons to lose sleep in an evening.
The pediatrician seems happy, he feels my little love is a little lazy as she approaches 14 months and still refuses to move. But he seemed impressed by her wide vocabulary of ‘mumma, dad, hullo, hiya, and owerrrr (owen)’.
Living with epilepsy for us means just the subtle st of changes. Although seizure free for four months we can never leave her alone, not even for a second, the nanny dog has not been trained in administering rectal diazepam so she needs a grown up around, just in case.
As I said, we are one of the lucky ones, epilepsy is a strange unknown condition and I have spoken to many mums and dads whose lives are dominated by it.
We could still be at the start of the journey, but I like to see it as a small piece of luggage we take with us wherever we go.
Thanks for reading.