Thursday, 23 December 2010

Good Samaritans, or Who Needs Respite Anyway?

Our second (and final) day of playscheme today. And, after Monday's route march, my chance to get everything sorted and ready for the next few days.

Our carer agrees to come slightly earlier, so the girls will both be up and dressed (in actual clothes, much to Little Fish's disgust; she's spent the past two days in big fluffy sleepsuits) in time to hike across to school. I actually remember both lunch and a feeding tube for LF, refill Mog's bag with her own supplies, and we leave in time to be only mildly late.

An uneventful walk up to school; LF goes off-piste a couple of times but mostly rescues herself. We arrive, I unload the girls, and go to grab my handbag which was hanging on the back of LF's wheelchair. It's not there. I say a rather hastier goodbye than planned, and retrace my steps, rather than heading off to find fish for tomorrow's feast. Get to the bumpy bit of the road, no bag. Further down the road, no bag. Make mental list of what's in bag - purse, cheque book, bank book, keys including the only set of keys we have for the van, assorted flotsam and jetsam, chocolate coins but thankfully not my phone which is in my pocket. Keep walking, hunting through the hedges and convincing myself I have seen it in the shadow of every dustbin.

Just as I round the corner to home, hoping against hope that it may have fallen off in our doorway, my phone rings. Playscheme have had a visit from a man who has found my bag. He doesn't have it himself; he passed it to someone else who lives just over the road from school. I retrace my steps, reaching the house with my bag just seconds before kind woman with bag leaves to drive bag to my house. Cancelling plans to find big shop, I walk back home again, calling at minor shoplet almost en route and deciding that what I have in the freezer will just have to do.

Home. Playscheme call, saying that Mog is having a seizure. I ask for details. It's clonus. I suggest they straighten her leg - this works, and they agree to call again if she has more problems. I eat breakfast, drink coffee, and gather together all the presents, wrapping paper, scissors and tape, assembling them all in the playroom where I hope I might find something suitably Christmassy to watch as I wrap.

Playscheme ring again; Mog has been fitting for 11 minutes and they thought I should know. I warn them she often goes to 28 minutes, which is why we give meds at 30; they agree to call back if further problems. I wrap Little Fish's present and begin on Mog's. They call back; she's still fitting. Whilst playscheme can give her Midazolam, once she's had it, she needs somewhere quiet to sleep it off for the next few hours, and sometimes needs oxygen, so would definitely be better off at home.

I suit up again and head back out, ridiculously heavy oxygen cylinder on my back. They warn LF that her day at playscheme is going to be cut short, and we all feel bad about the fact that she will miss the party and visit of a certain man in red. I walk into the school to be greeted by a grinning Mog, who stopped her seizure as I walked through the door. Toad. We debate what to do next, and she demonstrates she's still twitchy and definitely doesn't want to stay. I really don't want to walk home with her, then bring her back out again to go and fetch LF. But nor do I really want to sit in the school library for the next five hours.

I phone a local taxi company to see if they can bring LF home later. They say they are not running any wheelchair accessible taxis as it is too snowy. Playscheme are surprised to hear this, since this particular taxi company delivered at least one child to them this morning, in her wheelchair, in an accessible taxi. Hmmm. We discuss further options. Playscheme come up with the number of another taxi firm, which is not answering its phone. Two staff offer to walk LF home after the party, provided that they can get back to school themselves before the end of the playscheme day. We leave it that they will do this if the second taxi company is unable to help, and I load Mog back into her chair ready to go.

Mog and I slither home together, her monitor shrieking a warning that actually, post-ictal Mog does not appreciate breathing cold air. We collected some odd looks as I pulled the blankets up around and over her face until just her pony tail was on view, but she seemed to appreciate it.

Home, and drip our way through the house to the playroom. I shuffle a pile of presents off the settee and settle Mog in a corner. She grins, twitches, and falls asleep. I consider the things I was supposed to do on Monday, which got shunted to today, and the things I was supposed to do today, which will now have to wait until January.

And then I consider the fact that I don't have to cancel all my cards, I do have access to money over the holidays, and that LF isn't going to miss her party, and is going to be delivered to us one way or another. I can, if I am quiet, wrap a pile of presents as Mog sleeps, and in the meantime a house with a sleeping Mog is very nearly as peaceful as a house without children, and very definitely quieter than a house with an overexcited Little Fish.

I am, however, slowly sliding towards an agreement with those people who think the snow is a nuisance!

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