whatever the day brings

today, i felt it. as if someone was pushing on my throat.

my daughter goes back to school tomorrow for an hour, her first visit since January. she wants to go back, but she’s worried about what the other children will think of her. when i told her that it’s only an hour, and that the other children will be class, she burst into tears.

‘You don’t understand!’

after school, we have an appointment at the hospital to review progress. we’ve been asked to write some notes on goals, including any issues we’re struggling with.

so i’ve made notes. listed goals and issues, and sent them on, in advance.

i’m not going to think about what tomorrow will bring. i could imagine it any one of thirty forty fifty different ways.

i’ll deal with it as it comes.

but i know that feeling, the feeling of pressure at my throat –

stress.

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2 a.m. red flag flying

pitched out of sleep half an hour ago by my daughter howling with pain: pain in her abdomen and dreadful pain along the top of her right thigh.

she had refused all pain relief yesterday.

she has settled with liquid paracetamol and ibuprofen and is asleep again.

i’m awake. the night stretches out, black and red.


4.30 a.m. red flags

it was after 11 p.m. before my daughter fell asleep last night.

she gets spasms of pain that jolt her awake. she’s had a number of bad evenings in the past week, the pain tipping her from sleep.

i remember after she was born, waking before she did in the night. i used to think it funny – a kind of trip wire. maybe that’s hardwired into me now.

it’s times like this when, cupped in silence, i find it hard to square my daughter’s symptoms with the diagnosis.

Determining whether CAP [Chronic Abdominal Pain] is physiologic or functional can be difficult. Although the presence of red flag findings indicates a high likelihood of a physiologic cause, their absence does not rule it out. Other hints are that physiologic causes usually cause pain that is well localized, especially to areas other than the periumbilical region. Pain that wakes the patient is usually physiologic.

The Merck Manual: Chronic and Recurrent Abdominal Pain

other red flags include: persistent pain that is localised in the lower right-hand quadrant and pain that is worsened by movement.

this characterises my daughter’s pain exactly, yet no-one has assessed how movement worsens her pain.

what’s our experience? once placed in the FAP box, it’s very difficult impossible to get out. it’s a deep, deep box. you have to haul your red flags a very long way before anyone will notice they are flying.


one small pebble

seeing as how it’s just you and me here, i’m going to admit to something: a fear.

it’s not a fear i’ve had forever. it’s not really a fear i worry about much these days. it’s there though, now that i think about it, as bright and sharp as the day it made itself known.

i was sixteen or seventeen, and though i didn’t know it then, i was on my last family holiday with my parents and brothers. i canoed out to sea with my younger brother. we slipped away from the shore and the water was clear and warm and the stones on the bottom, slippery with sunshine. we paddled and drifted and paddled some more, until the shore had gone from us at a distance. the sea was cooler, then cold, and i looked down. i could no longer see the bottom or fathom the depth.

to this day, i do not like being in deep water, nor can i bring myself to swim in the sea. i’m the lame auntie paddling in the shallows, fretting when the kids go out too deep.

it is not the fear that stands out. it’s the timing of it – why then, at that point in my life? now that i look back, i know that my life was at a point of transition. within a year, i had left home.

we went back to the hospital today to talk about a way forwards. we talked and talked. we talked about what might have triggered my daughter’s pain. is it possible to identify a trigger, a stress point? starting secondary school? no? nothing obvious stood out.

but i remember that deep water, and it makes me think.

and should you find a pretty pebble, any small pebble on a happy, holiday beach – even the prettiest of little pebbles, when brought up close to your eye, will block out the sun.