I like Saturdays. They're the one day in our week when we don't have carers. I love that we have carers, I love the carers we have, and I wouldn't be without them. But on Saturday, the house is ours and ours alone. No need to set an alarm, no need to be dressed before seven in the morning, no need to think about making polite adult conversation (or cups of tea).
Well, that's the theory anyway.
A miserable night with Mog who decided to spend late evening failing to find the right position to breathe in. Repositioning and she appeared to be breathing quite nicely - as long as you didn't listen to the shrieking monitor. A blast of oxygen and the monitor started agreeing and I stopped mentally trying to work out where I could dump Little Fish if we needed to do the hospital run. And then the normal midnight, two o'clock, four o'clock pick my jaw up please alarms. Staggering back to bed after each one, falling asleep instantly, surprised each time to discover two hours have passed since the last alarm.
And then "Muuuuuum!!!! I waking UP!!!" fortissimo from another bedroom. 6.15AM. Ug. Stumble through to bedroom, hit switches to stop the vent and humidifier, brace back and lift smal child. Pause for swift cuddle perched on edge of bed (for if this is missed, force ten tantrums ensue), then hobble to sitting room. Plonk small child in chair, push button for High School Musical, weave back to bedroom, about to sit down when "MUUUUUUUMMMEEEEEEEEEEEEE I need a drink and I am actually STAAAARVING".
Toast. Water. Fall into bed. Find groove left from previous kip. Insert body, close eyes, back to sleep and DONGGGGGGGG Text message. 6.50 and parents texting from Tanzania, where they are trapped by Icelandic Volcano, wanting to know if the airports were open yet.
Fire up internet. Discover airports still closed. Reply. Rediscover groove. Close eyes. DONGGGGGGGG another text. From someone else. 30 minutes later and another one. Repeat until 9 AM, inserting one stagger over to the sitting room to replay HSM. Discover dead bird in hallway, thanks cats.
Give up. Drink vast amounts of coffee. Dress. Attempt to dress girls, discover Mog still fast asleep. Find Little Fish a pair of trousers and somehow end up changing water in fish tank rather than persuading her into them. Sort meds and milk for still sleeping Mog. Dress Little Fish.
Mog sleeps on. Cat demand food. More coffee. Little Fish demands entertainment. And conversation. And Peppa Pig. Carry out protracted internal debate over sinister similarities between narrative style of Peppa Pig and that of Big Brother. Conclude that behaviour and development of participants and audience in both cases potentially identical.
More coffee. Lunch. More texts. Mission to find someone to take over essential jobs from parents who will not be home as planned to do them. Partially successful. Persuade Little Fish a picnic on the sitting room floor every bit as exciting as a picnic in the park.
Mog eventually wakes at 12.30, having had only one episode between 4 and 12.30. Wonder why she couldn't have done that earlier in the night, when I might have been able to take advantage of it. Dress Mog, note that she is wearing the same pad I put on her at 7PM and that it is only barely damp. Decide this is possibly not great but probably not urgent.
Get Mog into her wheelchair. Little Fish grabs small blanket and crashes out on sitting room floor, foot in her banana.
Mog grins. Attempt to provide stimulating afternoon for Mog without disturbing Little Fish. Mog laughs and tries to kick her. Little Fish senses attempted kick from 2 feet away, wakes up and cries.
We decide to go out. Walk through the park; Little Fish is not interested in playing. Give up and head for chip shop. Sausage and chips and mushy peas and then bump into a friend who has locked herself out and has to wait for husband and children to return.
Bring friend home, sit in garden, Little Fish eats chips, we drink tea, Mog kicks my chair, and the cats poo. Nice.
Friend goes home, I clean Little Fish's gastrostomy site; Little Fish throws up, Mog laughs. Little Fish weeps, I post her through her bedtime routine as fast as I can, she settles in bed after telling me "It's not fair that my tummy hurts, Mummy". "Life's not fair sometimes" might not have been the best response, but she seemed to accept it. We read "No Matter What". Little Fish reciting alongside me, Mog grinning behind us. Little Fish rolls over. Silence. Bliss.
Mog twitches. And giggles. I reach for her to post her back into bed and realise from the squelch with which she separates herself from her wheelchair that the dry pad issue has been rectified. Post one less squelchy sweeter smelling child into her bed with appropriate cushions and monitors, watch happy giggly twitchy child morph into grizzly snurfle monster. Reposition. Observe monitor displaying 100 100 and exit room before it changes.
Write blog, and now I just need to wait twenty minutes until the air traffic report is updated, send that to Tanzania, hope the lightning they mentioned strike didn't hit anything too essential, and then get back into the groove, pull the covers over and hope tonight is better.