Monday, 28 April 2008


I was organised yesterday (not organised enough to post this yesterday, obviously, but still, a little organised). All three of us were reasonably smartly dressed, the girls modelling some of their vast haul new clothes; I even managed to wrestle persuade Little Fish into wearing her hair in bunches. Very smart.

We left the house on time, all three of us fed and watered, and for once with emergency supplies (nappies, wipes, buccal midazolam) in my bag. Usually at least one of those items is left here when we go to church, not disastrous since I live just 2 minutes away but still, not terribly convenient if they're actually needed.

We leave early enough that Little Fish can self-propel most of the way (power chair waiting for the wheelchair repair service to fix its broken arm. No, we didn't break it in Florida; we didn't take it to Florida). The lights at the crossing are with us, we cross elegantly and without getting small wheels trapped in the kerb, we saunter along the road and are about to cross over to get to church when I notice that Mog is twitching slightly. No problem, I think, smugly remembering that I have her emergency meds with me should they be needed. And then I remember I haven't given her her morning meds.

It's like the Bear Hunt. Back down the path, oh wait, red lights, press the button, green man, back across the road onto the traffic island, oh wait, red lights, press the button, green man, back across the road, past the pub, through the garages down the slope get to the garden and phew, but oh no, now here come our church friends looking mightily puzzled as we head back to our house instead of into church.

They offer to push Little Fish back to church again for me, a kind offer but one Little Fish rejects by the simple method of clamping her hands onto her wheels and screaming. Who needed a lie-in anyway? Serves the neighbours right for not coming to church! A lovely Christian sentiment, if I do say so myself.

So, abandoning both girls in the front garden, I let myself in and grab various medications. At the moment Mog has 6 drugs in the morning, one of them (the laxative) can wait, so I grab the others, dissolve the tablets, shrink the dose of the one we're withdrawing (Vigabatrin), draw up the baclofen and then stand in the garden with the girls, shaking syringes like a mad thing in order to get the glycopyrrulate tablet to break up. It won't be the first time there have been syringes in my front garden, but they usually have a habit of making their way their mysteriously overnight and not through my hands; it's definitely the first time the neighbours have been treated to the pill melting dance - thankfully by this time the kind friends have moved on, so Little Fish has stopped screaming. Push the medicines through Mog's tube, flush them, post the slightly sticky syringes and the little bowl of water into my bag, grab both girls and hot foot it back to church.

Amazingly we're still not late. I park Mog in the carpark and take Little Fish to her Sunday School class. This is only her second session there, there is debate about whether I need to stay with her, but in the end they decide I can leave her, provided that I come back after dopping Mog at hers. Little Fish is not best pleased by this, so I melt away as inconspicuously as I can, to throw Mog at her Sunday School teacher. Mog's group has a large adult team of musicians who are all tuning up and counting down until the start of the service, speakers blaring, children running around colouring things in; she's very happy. A quick march across the carpark to Little Fish's group, where I stick my head around the door to check they are ok. Little Fish is fine, she's found another child in a wheelchair not dissimilar to Mog's, and is attempting to push her around the room. She is distracted with toy cars and boys to play with and crayons to eat draw with, and the leaders assure me they will be fine.

So I make my way to the main church building and sit myself down. An epic moment - since Little Fish moved in in February last year I have spent most Sunday mornings sitting in creche with her. I came into church for a couple of weeks, but there were a lot of babies and toddlers in a very small space, and it wasn't a safe place for her to be. So with the exception of family services, I have sat in creche and revisited infant theology. It hasn't been a waste of time; I now have a very good idea of what the creche children are being taught, I have ideas for things I can do at home with the girls, I have had time to chat to other parents. I'm still not sure about the morning when the children were handed paper telephones and told they could call God at any time - yes, I understand they were trying to compare prayer to a phone line that was never engaged, but I still have a feeling that may have been above the comprehension level of the average two year old child.

Things were sorted for Little Fish last term, just in time for me to help Mog transition to her new Sunday School. Again, not wasted time - important for the teachers to know how to communicate with Mog, how to read her, and what constitutes a medical emergency as opposed to what is just normal life for Mog. And great to see the inside scoop on what's happening for the children in her group - it's a very big change from how things used to be done, an awful lot of work for the leaders but very exciting too I think. It's been running for a few years now, but it's the first time I've seen what they're doing other than what they bring over to family services. They've had to make a bit of a change to accomodate Mog (move a class group downstairs), and I'm really pleased they've managed to do it. Of course Mog has celebrated by sleeping through most of the sessions so far, but I do know that when she is awake, what she is hearing is reaching her better than what she was hearing in the younger group (mostly the noise of other children playing!). I've seen her listening and heard her joining in, even if her group leaders don't now pick up on it I know that it's the right place for her to be.

So I left both girls in their own groups, and went to sit down in church. And got to join in a grown up worship session, and got to hear a grown up, adult, sermon without having to download it from the church website. There's a lot to be said for having children in the service, but oh my there's a lot to be said for having a nice distraction-free adult service too. Of course having managed that yesterday, next weekend we have a gathering of the clans to celebrate a 60th wedding anniversary, and the weekend after that my friend's son is being Baptised, so it'll be three weeks before I have the luxury of sitting in a service at our church again; and if I'm not mistaken we've a couple of family services after that over half term, but still, it happened once and I'm confident that it'll happen again some time this year. Very nice.

After all that lack of organisation, we were tired, so we headed back home again. More kind friends pushed one of the girls for me, Little Fish raced the "boy boy" to push the button at the traffic lights, we fished someone else's empty vodka bottle out of the front lawn, and went inside for lunch.

All attempts at organisation fell apart after that. There's still a huge amount of joy involved in watching Little Fish eat a sandwich; she can eat a banana without it needing mashing too now, and even had a go at some melon. This was apparently the worst possible thing I could have tried to give her, it was very scary even to look at. I'm clearly an evil mother. Once safely hidden in the 'fridge lunch was over and we spent the next several hours sitting in the garden. Mog got to laugh at the light coming through the blossom on the apple tree, and Little Fish burned off some energy doing wheelies down the ramps and slogging her way back up again.I meanwhile got to sit back in a rocking chair and read a book, perfect.

It's a shame I forgot about the St George's Day Parade we were supposed to be attending in town.

The girls were nicely tired out anyway, and settled well to sleep. Until 4 this morning, when Mog woke with a fit and a jump and a spasm and a twitch and a scream and a sob and a start. Her brace is broken and she does not like to sleep without it. That's not true; I'm sure she'd love to sleep without it, but without it her body twists into a pretzel, this pulls on the plates in her hips and is very painful. Painkillers given she started to relax, eventually morning medicines given a couple of hours early, and she slid back into a comfortable sleep, propped up in her wheelchair. Woke up long enough to get clothes on and eat breakfaast, and then fell back to sleep solidly enough that not even the arrival of our cleaner with hoover woke her up. So, one child not in school today.

Little Fish on the other hand slept in this morning. Still woke in plenty of time to have breakfast, get her clothes on, and sit and wait for the school bus. She likes to sit in the window and shout to me when the bus comes. Very useful; I can get on with writing in home school books, packing spare clothing, sorting out milk and lunches for Mog, and so on.

It was as the bus drove off that I realised Little Fish had not had her morning water. A quick call to one of the most flexible nursery teachers I've ever met, and problem solved, but not a great start to the week.

In other news, Bob says he now has a loan van from the insurance company (yes, the need for it was news to me too), and he will be here in the morning. I do hope so. I'd really like to be able to cook in the kitchen again. Watch this space


Lauren said...

:/ Hope Bob does make a comeback tomorrow!
Poor Mog, give her a squeeze from the boy-boy and I (and LF too!)
I now have images of a very bendy nursery teacher....

Doorless said...

You wore me out! Wow!

Tina said...

i love that feeling when i sit back in Church having delivered al the children to unday is my guaranteed respite every weekend!

Hope you have sussed it now and it all works welll for the girls and you!

I am so rassured that it is not only me who leaves things behind and forgets water and all those other things!
much love

Pauline said...

That was quite a day wasn't it... I need a rest now from reading about it :D


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