Wake up to sound of oxygen monitor, 3am.

Roll over to see fellow sleep deprived parent roll out of bed, peer at monitor in the gloom, decide child is safe (he is snoring softly after all), crawl back into bed.

Places icy cold feet on my legs, illicit shriek… quickly rechecks child, all is still well (snoring). Idiotic parents cannot contain giggling. Eventually stop giggling and attempt to get back to sleep.

Dog wakes, barks to go out. Roll out of bed, stub toe on end of bed, cuss (quietly), open door to let dog out. Dog flops onto floor, rolls onto back to present belly for tickles. Really Merlin? At 3.30??! Realise that dog will not go out/settle until after tummy tickles. Tickle dog’s tummy. Dog pees on feet. Dog unceremoniously directed outside for wee.

Dog refuses to come back in. It’s freezing, think sod it. Leave door open for dog to return. Crawl back to bed (we live in a bungalow, so the door in question is our French window, within sight of our bed).

J up at 5.30, little dude still snoring softly. Sam wakes at 6, seizure hits immediately. Once recovered, nappy changed, meds given and breakfast sorted.

Kettle on for the all-important morning mug of tea. Sam complains bitterly at being awake and being dressed.

While attempting to remove air from syringe, 25mls of bright purple (blueberry based) blended diet is fired half way across the room (over child, chair, floor, TV and up curtains). Mutters obscenities, makes mental note to buy Vanish while wiping food off child/clothes/TV.

Sam deeply unimpressed with this. Manoeuvre small person out of p-pod and into wheelchair… attempt to discover where, precisely, the straps have disappeared to this time.

Strap Sam into wheelchair, do battle to get hat on him as its sub-zero outside. Hat lasts less than 2 minutes. Put hat back on child. Wait for taxi to arrive, wheel Sam out to meet taxi. Realise I am still in attractive Muppets PJ’s and slippers. Once Sam is in taxi and off to school, hurtle round trying to find clothes while J feeds cats, dog and prepares to take dog out for walk.

Locate clothes. Attempt to locate hairbrush. Decide brushed hair overrated.

Scruff hair up with bit of wax to help make it look like designer bed-hair… not only-just-got-up bed-hair. Fail. Attempt to locate matching pair of shoes.

Arrive at work and cherish calming normality for the next few hours.

Get home to happy child who proceeds to tell me all about his day in his own way, cook tea, feed child, give meds, change nappies, deposit sleepy little person into his bed. Listen to said child singing happily for next hour. Wonder why I bother putting him to bed at a sensible time…

Collapse into bed exhausted, attempt to sleep while listening to the lovely, reassuring sounds of the little man breathing softly.

Get out of bed to check his SATs monitor is turned on, pause to gaze in wonder and absolute adoration at this wonderful, amazing little man who defies the odds daily. Remember why it really is absolutely all worth it, chaos and exhaustion included.

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