Looking for Patterns

When Hugh was little we tried to work out why his seizures were happening, what was causing them. Sometimes we attributed them to illness- an underlying chest infection, brewing chicken pox, sickness and diarrhoea. Other times it seemed to be pain related- teething seemed to bring them on. But often, and increasingly so as he got older, there was no obvious trigger, nothing we could pinpoint that was the cause. They just seemed to happen. So instead we looked for patterns, attempting to find order, to give ourselves a sense of control over something which we really had no control over at all.
Recently our pattern appeared to be about every three months Hugh would have a big-not-breathing seizure. He'd invariably be hospitalised and more often than not require IV drugs to stop the pattern. We'd have 3 bad days- he'd need resuscitating anywhere between 6 and 20 times over that 3 day period. He'd be out of sorts for a couple of days, extra sleepy or with lots of other type…

Tonight We Have Respite

Tonight we have respite. 

And while Hugh is cuddled and cared for by competent nurses, trained in every aspect of his care, Sean gets the undivided attention of his mum and dad . Together. Not one, or the other, while someone deals with Hugh, or feeds, or medications.. Both of us. Together. Just for him. 

On account of a brilliant First Ever parents evening, we took Sean out for a meal - to a local curry house; where they make a fuss of him and bring him sweets and where we'd never be able to get Hugh and his massive chair through the narrow door,up the teeny tiny corridor, round the tightest of corners to the jam-packed restaurant full of tables and chairs and customers. And we ate and we laughed and we ate some more. It was lovely.

And tonight, I can go to bed at whatever time I like (it will be early!) - not at midnight because Hugh has decided (again) that sleep is for losers. I can close my bedroom door without worrying I'll miss an alarm ora pause in breath. I can sleep, without the fear of seizures, or choking on secretions, or his latest trick- sleep apneoas. I won't wake until morning, not having to get up 5 or 10 or 15 times to re-set alarms, do chest physio or put Hugh in the recovery position to aid his breathing.

And Sean won't be woken in the middle of the night by the screech of alarms, or early in the morning by the sound of his brother's crying.

Tonight I didn't have to mix feeds and weigh powder and draw up medication into syringes. I didn't put on creams for eczema, tape sats monitors to tiny kicking toes or switch on the video monitor.

Tonight is a break or us all. 
It is respite. 
A break away from the routine.

Which is good. 
And important. 
And necessary.

And ten miles away, my baby is in a bed, in a room, in a hospice, on his own.

While his family ate and laughed together, a nurse bathed him and put on his pyjamas.

While we sleep, a stranger comforts him in the night.

Respite is good, and necessary and important.

But tonight, before bed, I could only kiss one of my babies goodnight. 
And that doesn't feel so good at all.