Waiting for blood test results, EEG results, waiting on medications to come up from pharmacy, waiting for the consultant to come, waiting for a Plan.

It’s the pattern for our lives, and it acts as an infuriating pause in our lives.

Time going too slowly and not allowing us to get on with the crucial business of living.

For all his disabilities, Sam is a 5 year old boy who hates waiting as he gets bored.

While we try to entertain him as best we can, the waiting is still as hard for him as for any child.

For many of the battles, he is blissfully unaware of how hard Mummy and Daddy are fighting for him..

He may hate being stuck in a clinic waiting for an appointment, but at least he doesn’t have to deal with the inevitable battles to get appointments through in a timely manner, or having to chase up equipment promised months ago that hasn’t materialised.

This time, a different hospital. Waiting to see if VNS surgery will go ahead.

My gorgeous boy. He looks so little, so young, and so fragile in the enormous bed.

With his SATs monitor display glowing softly in the corner of the room, monitoring my little mans oxygen levels. They’re not as high as usual.

We’ve waited three years for this day to come; its been a fight to get to this point and now we wait to see if the risk of surgery outweighs the risk of delaying.

He had a cold a week ago, it developed into pneumonia.

We’re almost certain surgery won’t go ahead and were reluctant to bring him in, to put him through another two days of waiting in hospital.

But it’s a Bank Holiday, so waiting is inevitable as the anaesthetist and surgeon weren’t in when we arrived on the ward.

A few hours later, the decision is made to delay.

It’s a mix of emotions – relief that he won’t have to go through surgery and its aftermath while still not 100% well, and a level of frustration that is visceral.

We know it won’t be long, we’ve waiting three years after all, whats another few weeks?

And so, the waiting continues.