Counting Time

An ordinary day – doctors, shops, park.  Nothing a million other mom’s who are avoiding the housework aren’t doing and yet I know today is poignant. It will sustain me through the coming weeks – I’ll re-watch the video of Xavier giggling on the swings to keep away the tears; I’ll stare at the photographs of the geese and smile in the small hours of the morning; I’ll pick out my favourites to show everyone so they can see what we see.  I store up days like today to get me through days like Thursday.

Thursday we will return for a fourth time to Birmingham Children’s Hospital, we will hand Xavier over to the anaesthetics team for a 9th time, and we will count time.  How long until we can reasonably ask for an update?  How long is back too soon?  How long until he should be back?  How long until he’s been down too long?  How long until we can fetch him and hold him?  How long until we know if it was a success…

But for now it is simply how long until the next feed, nap, nappy change, O2 tank needs changing.  How long can we hide out in the park and pretend that this week is any normal week?

The swings have always been a favourite – PEG feed off (managing an O2 tank is enough), swinging as high as he can go, face up to the sky, his quiet giggles filling my tiny world.  A walk in circles around the swings and slide, I have the O2 cylinder in one hand and his soggy gloved hand in the other (the glamour of a teething toddler where everything is worthy of a chew!!).  Swings briefly but the walk has run him out of puff and I contemplate whether the out of breath is caused by the cold, his lungs or his heart.  Episodically, “blue” blood gets pumped around the body dropping his o2 levels but it’s nothing we can predict and it’s only now he’s (constantly) fully mobile we’ll really see the effect.  We’ll try hard to ignore it and compensate for it because that is an operation we really aren’t ready for…

Geese feeding time – geese are far more popular than ducks with Xavier at least, and I positively resend feeding the pigeons!!  Xavier has a pretty good danger radar – he can tell the difference between a doctor who’s come for a chat and one eyeing up accessible veins easily enough, yet he’s desperately trying to reach out to stroke the grumpy goose.  They eye each other up, one with hope and love, one with wariness – Xavier reaching hard and the goose (sensibly) backing slowly away.   There’s no more good left, the pigeons have gone, the ducks are desultory and the sun is sinking slowly down the sky.

Have we had enough fun?  Have we packed enough ordinariness in?  Will he remember the goose and the dogs and the hot chocolate froth when he’s lying in his hospital cot?

An ordinary day – doctors, shops, park.  Nothing a million other mom’s who are avoiding the housework aren’t doing but when I go in to have my bloods taken I have to promise my son the nurse won’t touch him.  the shopping is books to give to “our” ward for the parents stuck there over Christmas and the park is my attempt to squeeze some ordinary into our life, to make the memories that help get me though.

From 0 to X in 18 Months

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