What it's like to have a child with seizures?

It’s the helplessness as you look in their eyes, knowing there’s nothing that either of you can do to stop it. It’s keeping them safe as they violently and uncontrollably shake, it’s watching their eyes roll and lips turn blue as they hold their breath, it’s praying you’ll hear that gasp of air so you know they are breathing again.

But then it’s more than that…….

It’s the exhaustion, the confusion and the tears.

It’s the panic and dread with every bang, every knock, every noise, and every twitch.

It’s the sleep deprivation, it’s setting alarms, it’s watching their chest rise and fall, it’s sleeping by their side.

It’s the fear of not knowing, the uncertainty. It’s continual awareness of where they are and that they are safe. It’s calling their name just to hear their voice. It’s being on guard, it’s no locks or shut doors, and it’s having their privacy stripped.

It’s the anger, the aggression, the agitation, the outbursts, the bruises, the tears. It’s being broken and wondering how you are ever going to pick up the pieces.

It’s the hospital visits, the ambulance rides. It’s the medications, the treatments, the side effects. It’s the blood tests and searching for answers.

It’s the feeling of failure because you have always healed every bruise, every bump and every fever but this is bigger than that.

It’s doing it alone when most walk away. It’s the anxiety and the stress of juggling it all. It’s the siblings, the partner. It’s holding it together when it just wants to fall apart.

It’s a lack of awareness when you hear people say – It’s just a seizure, it could be worse!!

But what I’ve learnt is……..

It’s ok to cry, to crumble, to hate the world. To scream, shout and swear. To search and read until

your eyes are wide shut!

And then……

It’s about celebrating the milestones and successes no matter how small.

It’s holding on to hope, to keep fighting because that’s what it means to be a mumma of a child with seizures.