Thursday, 13 November 2008


I had plans for today. Big, important, Christmas-and-birthday-and-wedding shopping plans. I like our Thursdays. Little Fish has a full day at preschool and takes a packed lunch - she loves this and falls asleep on Wednesday nights muttering about her "dunt bots" and what we'll put in it. So for one day in the week I have in theory 5 whole hours to myself. Mog scuppered a complete day off by still being full of seizures and needing midazolam in the wee small hours, but a day with Mog, even a poorly Mog, is just calmer somehow than a day with Little Madam Fish. Mog has a very restful presence; I can lose hours watching her sleep. So maybe not a mammoth shopping day, but a quiet day at home listening to the rain and snuggling up together still sounds pretty good to me. Who am I kidding? It sounds much better than the shopping!

Early morning seizures for one child and a longer lie in for another meant that we were running late this morning. At ten past nine I shut the front door ready to make a five minute dash through the rain to drop Little Fish at preschool. Three hours later I walked back through that front door.

No, Little Fish didn't suddenly need me to stay at preschool, no Mog wasn't suddenly acutely unwell. I just left my keys on the hall table, that's all.

Good news! I can break in through the back door
Bad news! Now that we have a new back gate I can't reach the back door without grappling irons keys.
Good news! My parents have a spare set.
Bad news! They work.
Good news! Dad was waiting for the boiler repair man working from home
Bad news! The keys were in Mum's handbag.
Good news! There's a bus we can catch to her place of work.
Bad news! It is persisting it down with rain, there's a long wait for the bus, and Mog is coughing.

The bus eventually came, the bus driver didn't know where we were supposed to be getting off but thankfully other passengers did, and we were reunited with a door key, hurrah. Nice to meet Mum's colleagues and students, even if one of them did ask "are you the blog lady?" - here's a personal hello from the blog lady to you! At least it wasn't "crazy blog lady".

Home and a brief interlude before setting out again to collect Little Fish and head back into town for our 'flu jabs. Mog was not impressed. Nor was I actually. Little Fish has the advantage over us in these situations; the nurses will usually inject into her legs, and since she has no feeling in them she doesn't even notice most of the time. Off to the chemist to drop off new prescriptions - Mog's feed is changing again and Little Fish needs something to supplement her diet of yoghurt and cheese and chocolate. Back through the wet to the key shop; I now have enough spare door keys to share them with various strategically placed neighbours and friends. Additionally considering surgically implanting one in each of us and secreting them in various nooks and crannies in the wheelchairs. To the bookshop to buy a birthday present; Little Fish is adamant that her six year old friend will love a set of Charlie and Lola books; I hope we don't mortally offend him when he opens them. Lovely, lovely people at the bookshop, they gave each of the girls a Charlie and Lola jigsaw puzzle and one for the birthday boy too! It's a lovely place.

Despite Little Fish's mutterings about "dinner shop please Mummy" we came home in time for tea and LF's new fixation, Teletubbies. This is an interest both girls share; it's lovely to be able to put a video on and ignore them both for an hour get on with other things for a bit. Then our evening carer came and Little Fish excelled herself - wheeled herself into the bathroom before we could get Mog there and insisted on the carer giving her a shower before touching Mog. Carer was entertained rather than annoyed, and I certainly wasn't going to argue, so had a slightly less harried evening - LF even let the carer clean her stoma, which is impressive considering she screams and pulls out her hair and slaps me across the face when I try. On the other hand if she can contain herself then hmmm I think we need to be working on not turning Mummy into a punchbag.

Bed time and Little Fish was less impressed with having to use her back up Nippy mask. But her favourite one is eating holes in her face, so she'll have to have the spider's web one for a few nights. She doesn't like this. I don't either actually; it works loose and alarms in the night. Mog meanwhile having been quietly happy most of the evening decided to go for an evening screaming session. She's on new medication for her seizures and now coming off one of her older meds too, but during the handover period that means 4 different anticonvulsants. Each of them work by damping down (or stimulating) different parts of her brain; add in the constant fitting and general electronic discharges and it's not surprising she's in a bit of a meltdown.

And now it is bedtime for me. Two of the children on our special kids in the uk list have died in the past week, both unexpectedly, just fell asleep and didn't wake. Having watched a child suffer horribly I suspect that a peaceful "should I die before I wake, I pray the Lord my soul to take" death is a nicer way to go. But it certainly doesn't ease the shock for the family and for everyone who knew and loved the children involved. And it doesn't do much to make for a restful night - I think we are all watching our children more closely, will my child be the next one to go?

I pray not.

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