Saturday, 14 March 2009


Two pictures from Red Nose Day yesterday; Mog getting her groove on
And Little Fish, who had been annoyed about the fact that she wasn't at school so did not require fancy dress, getting over her annoyance by taking charge of our carers' record book.Fortunately there was further compensation in the form of a delivery, and Little Fish is now the proud owner (and wearer) of these:
Makka Pakka Pants!One very happy little girl, emulating her Uncle Graeme (no, he doesn't wear Makka Pakka Pants (or at least I don't think he does, and if he does, I don't want to know!); but at a similar age he took a similar interest in underwear and had a similar penchant for sharing his with the world. If you know him, ask him about the Christmas Boxers).

That was yesterday. I'm trying to catch up with myself, so here's today too.

I was organised today. It doesn't happen often, and it won't happen again any time soon. But for once, I had a vaguely kind of workable plan for the day, culminating in getting us out of the house, all polished and dressed, and ready for a properly smart impressive party this evening.

We started with our normal morning stuff.

We were very planned. Mog decided to take me at my word, and when I said "you need to have a bit of a stretch this morning, it'll be a late night tonight", she promptly refused to get out of bed until 2. So when she did finally get dressed, it was straight into her party outfit, and just in time for her birth sisters to come over and sort her out with a pretty hair do. I think it's safe to say Mog liked the idea of a party.

Little Fish decided a bath would be a good plan, and so she got dressed nicely early too. And also had her hair styled at Mog's Sisters, inc. She then decided it was time to go, and set off out.And was only foiled by a lack of knowledge as to where exactly the party might be, so condescended to rejoin us in the house.A process which takes some time when you have small wheels and a long ramp.
But she made it eventually!

One or two minor hitches; it occurred to me shortly before we were due to leave that I wasn't entirely sure whether the party was at the Hotel in OurTown or at the same Hotel in OurTown Road, Othertown. Texted a friend to find out, and then decided to do as much of our going to bed type things as we could, to make things easier post-party.

And that's really where it all started to go wrong. Take one small child, remove waterproof padding and then discover you have mislaid the replacement, and that's when you'll have the pleasure of discovering whether you can tumble dry a silk dress. Turns out you can, even though the label says not (phew!) but I wouldn't recommend it for peace of mind.

Plonk small child (too late) on potty, change larger child, and discover alarmingly similar situation. Deal. Return larger child to wheelchair, respond to text from friend with relief at local Hotel use and apologies for forthcoming lateness. Extract small child from potty at child's request, place on bench, rescue dress from dryer. Watch in disbelief as small child has delayed reaction to earlier suppository, and decide to be thankful it's only a towel and bench, and bath rather than the poor abused dress.

Clean child, whilst older child smirks in irritating "I would never do that" fashion and refrain from reminding her of all the times when she has. Throw small child into the bus, wheel larger child into bus, clamp down and drive off.

Get half way to destination and hear small child "Oh NO Mummy I not got my wheelchair". Do a U-turn in a side road, and head home for the wheelchair. Drive off again. Come back for the birthday present. And then a small child's emergency toy.

And then finally arrive, unload the bus, and wheel two children into the party. Little Fish adamant that this is HER party, despite repeated assurances that it is not, and that her birthday is not yet. She liked the balloons, anyway.
One nice, relaxing evening with friends (K, you were missed and in our thoughts). One small girl not put off by another child's assumption that having a wheelchair means you can't dance, one larger girl who gave a reasonably convincing impression of someone sleeping through an evening. One small girl eating cheese sandwiches and chips, one larger girl who managed three tastes of strawberries before she choked, excellent progress.

And then suddenly tears and trauma and "I not like this party", and bedtime and more than bedtime, and everything went horribly wrong. But not for long; into the bus and a short drive home, out of the bus and into bed, a huggle and a kiss and a quick Thank You God, and one small child with a nice soggy sleeve slipping into a much needed sleep.

One larger girl, having been energised by the strawberries and the atmosphere, demonstrating how unnecessary going to bed might be.
This is a special photograph; for years Mog has been tied to twelve hourly medications to keep her seizures under control. We've been tied to getting back from evenings out by 8.30 at the latest in order that she can have her bedtime dose in good time and not need midazolam. Now Mog did have a biggish seizure earlier on today, and she did have her breakfast meds late too. But it really has been years since we've been able to be out this late at night and not have her even mildly twitchy. Excellent.

And now it's midnight, and Little Fish is processing the day in her sleep, little mutterings escaping her lips as her mind works through the highs and lows. She calls out to me, and I go in to adjust her sleeve and move her Nippy a fraction of an inch, and in her sleep she snuggles up to me and blows half a kiss before nuzzling deeper into her sheet and letting the Nippy take over.

And in a different bedroom, Mog is singing loudly, celebrating the day and dancing to the music which finished an hour or so ago. Not wanting or needing company, just processing her own day her own way.

And I shall finish this and hit send, and head to bed myself.

It's not a bad life.


Michelle said...

Oh I LOVE that picture of Mog. Just look at that hair! She is so special. Both girls are just beautiful.

Michelle & girls in Washington

Anonymous said...

How lovely the girls look--all dressed up!

sarah bess said...

your girls are dar-ling; that's all I can say, except that you're also a tremendously gifted writer. Your blog is the best I've found.

Anonymous said...

Great smiley picture of Mog! Have to admit - didn't realise there was a small person 'on' the chair until the movie started - thought it had become an extra wardrobe!

Anonymous said...

What a wonderful day! The girls look lovely and so happy - YAY!


Sara x said...

The girls look so adorable xxx

Tina said...

What a wonderful couple of days yiu have had.

Singing and dancing at midnight not needing company but processing her day her way....goodness Mog is getting so like Goldie!

Love all the photos superb memories and amazing progress in so many ways. The joy that special one of mog evokes in you though is priceless!
Much love

Doorless said...

Mog is beautiful! The dresses awesome! LF well what can you say! She is very entertaining! I could not believe the w/c antics. Never a dull minute in LF land.
Oh how she will love those panties. How wonderful.

Anonymous said...

The girls look totally beautiful,thank you for your blog it is SUPERB and always cheers me up.

Anonymous said...

Thank you Tia and girls for making our party such a lovely time....thank you LF for dancing with P, and for having so much fun with us! Love to you all xxx And you looked so beautiful - both times lol !!

Anonymous said...

I want Makka Pakka pants!

Tia said...

LF liked dancing with P - if "hey boy, fall down!" counts as dancing!

A good night though, thanks for inviting us.
And thanks, others, for the lovely comments.

Anonymous said...

thank you for starting my day with laughter.

Just off to read about the next party now.

We missed a good un though!



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