There is always a fear of letting go of the protective defence, to just relax and enjoy life, with that nagging concern you know your own reality.
Yesterday we chose to dare to let go and finally made time for just us as a couple, whilst Rio had a fun day with Tia and his care giver; we made a promise to make it happen more often, as it is really needed. Then reality came a knocking to remind us…
…. tonight Rio had yet another seizure (no need to worry, this is his norm and he is fine) but it suddenly hit me … 18 years of seizures. They started around this time 18 years ago when he was 6 months old.
I can’t imagine the toll they take on Rio; I don’t have them, I just take care of him having them and that is traumatising and exhausting enough.
We often wonder what must he feel or see or think pre/during/post a seizure. Is he scared? Is he aware? Does he feel pain? He can’t talk and tell us, and we find that frustrating and painful, leaving us feeling helpless not being able to fully truly empathise with him, but we do our best.
People also often ask us how Rio feels during a seizure and we can’t honestly answer.
We know so many parents of children whom are non verbal and have seizures asking exactly the same question.
Seizures affect so many people. So if you have seizures yourself and you are comfortable sharing, please do tell us the experiences you go through pre/during/post a seizure and what you need community to know about seizures and what you need us all to do … so we can all better understand as a community.
Thank you, this would be a great peace of mind for me as a mum and for many others
(He’s fine now, just sleeping and recovering!)