Sisters

Because sometimes no one else will do. Whether it's first thing in the morning before the day begins, or in the middle of the school day when a party has thrown out the routines, or that magic time of day when the school bus lumbers its way up the drive, or last thing at night when sleep can't be fought off any longer. Any time, anywhere, a kiss from a sister makes the world a better place.

Tia

Little Miss Independence

What do you get if you cross a small child in a powerchair, a
hydraulic tail lift, and a high wind?

One rather deep dent in the bottom of the door, that's what.

The wind blew a cup away, I ran after it. Little Fish unfolded the lift and took it down to ground level. So far, so sensible. LF then
drove herself onto the lift and raised it back up again, not registering that the door had blown back over the lift.

She's still convinced I was just being mean when I grabbed the controls and lowered her down to start again.

It doesn't look like much of a dent, and so it isn't, except that it's rather inconveniently just enough of a ding to prevent the door from latching properly. This in turn makes it impossible to lock the door, and the joys of central locking make it impossible to lock any door at
all.

Hurrah for Hemmings; a man with a hammer bashed the worst of the dent out and charged us exactly nothing for the privelige. But now I need to squeeze out a day when I can be car free so the panel can be fixed
properly and made rustproof again. Better the door than her legs
though I suppose.

Tia

Ups and downs.

Mog's new head and backrests arrived this morning. I think it's safe to assume she likes them. Instant growth for her; she sits three inches taller now; head gently cradled, shoulders supported, sides snuggled in no longer scrunched and twisted. A sign of comfort; she was asleep in her seat by the time we had finished tweaking the chest harness.

That's the up; the down would be for Little Fish. A phonecall to let us know the local education authority have refused to fund the full support she was promised (and needs) for school next year, leaving her short by one hour each school day.

A call from our nurse giving us a choice of antibiotics for her latest gastrostomy infection; both ups and downs here. Bad that she has an infection, good that it is not on this occasion MRSA. Good that it will respond to antibiotics, bad that she will therefore have an antibiotic tummy for the end of term. And then a late phonecall from the duty doctor; bad that the fax did not come through early enough to get treatment sorted out to start tonight, but good because I was able to request a bottle of oxybutinin at the same time, having realised too late that we have no spare bottle and the present one will run out in the morning.

And then an evening out for myself, an up. A barbecue in the pouring rain; probably a down. Some beautifully marinated chicken; definitely an up, but another late night, and the second of three nights in a row out of the house, probably a down as far as Little Fish is concerned.

One nice up though; training for the new school staff all going ahead as planned, the school still seem to be keen and willing to learn. And, in a neat piece of continuity, one of the staff trained today to meet LF's needs is the daughter of LF's present nursery nurse, and will be Mog's Brownie Guider in September.

More ups than downs I think; it has felt like a good day anyway.
Tia

Mog Time

Mog has had a really good day today. An early start, and a shout shout kick for coffee- first time she's wanted breakfast since Easter. Home from school later, and still offensively cheerful; singing and shouting and generally being rude in a way only truly possible when you are non-verbal and surrounded by people who can interpret your facial expressions. Kicking my shins (just as well she isn't wearing shoes these days) to ensure her share of our evening meal, and slurping and swallowing a tablespoon sized portion of mash and gravy. More food than she's wanted or managed since last summer I think.

A quiet flop onto the shower bench later, and unprotestibgly shuffled into her nightie. And then big fuss, big tears, howls of outrage at the bare thought of bed. Little Fish by this time tucked up and our sitter here, Mog's protests growing ever louder and more forceful. So we bundled her back into clothes, and into the bus, and I trundled off to Guides with her in tow.

A nice evening for her to reject bed; a campfire and wide game up at a little cottage in the woods. Park the car and push her buggy up the hill and through the nettles, follow the noise to find the girls, and then sit downwind and enjoy Eidelweiss and Campfire's Burning and Everywhere We Go. And embers just right for marshmallows, and the creak and groan of wooden shutters on the windows of the ancient cottage. And a sun slowly slipping from view, and the squeak of bats emerging from their boxes, and the gentle smack and splat of hands seeking revenge on midges. Giggles and woodsmoke and a gentle breeze, and Mog cooing quietly and taking it all in, preparing herself for a week of this at the end of August.

And then home again, and into bed. And suddenly the woodsmoke becomes not the gentle scent of summer but an overpowering smeech; alien and unwelcome within the four walls of home. Three hours past bedtime though, so too late for a shower. Instead as the smoke settles in hair and clothing, a small child now finally settles into bed, welcomes the same bed she rejected with such determination three hours ago, and settles down towards sleep with just a musical coo echoing her contribution earlier in the evening.

It's not a bad life.
Tia

Resistance is futile

Mum, I wanna ast you something. Mum, Mum, Mummy Tia, I need to tell you something. Um, I would like a likkle pizza please. Please, Mummy, it would be very nice and I am a bit hungry. You order one, pleeeeeeeese, Mummy, a pizza with the man bringing it in a box and we can eat it. We could ave one Mummy, we could. I would like one it is my favourite and my best it is.


Anyone care to explain how one small child can eat her own bodyweight in pizza with no I'll effects and yet choke on pasta, gag at the sight of a bread crust, and refuse to allow anything green within three inches of her face? How can h
she retch on a banana milkshake (tubed) and have space for slice after slice of garlic bread? And why are cheese and ham on a plate something to cry about but cheese and ham on a pizza something to celebrate?

Do Dominos make cauliflour and courgette pizzas? Oh, and why is pizza in a box from a man at the door her favourite and her best, but pizza from my fair hands and pizza from the freezer both objectionable?

Readers, we ate the pizza.

Long day today. Up early, and for once LF consented to eat her breakfast (1/2 a slice of toast) in somewhat less than 30 minutes. Smart clothes all round; matching dresses for the girls to LF's delight and Mog's displeasure. All dressed, hair brushed without tears for once, polished shoes, ironed tops, and a reasonably clean house too.

Off to church where for once we managed to be early. Girls delivered to their various spots and I to my semi regular slot into the next-but-one-to-the-back-of-the-rows-in-front-of-the-door aisle seat. It's a comfortably safe spot. Close to the exit if needed by crying child. Or if the church should suddenly burn down; an unlikely prospect but important to be prepared and ahead of the Zimmer brigade . Within smiling distance of several housegroup friends, handshakeable distance from the earnest brigade, and shoulder polishing reach of woman whose name I am now resigned to never remembering. A safe distance from the drums and out of wincing range from the speakers; a spot nicely placed to give a good view of most of the rest of the church whilst still being able to read the words on the screen in front. And for once, feeling reasonably smug - not late, no toast crumbs or coffee stains, proper shoes and even a skirt- and a skirt which i had tied in several different ways in front of a mirror before leaving the house to ensure it was neither inside out nor at risk of unwrapping itself and revealing a pasty white leg during communion.

And then the service started, and I put my hand up to my collar, to loosen off my tshirt. And then my fingers found a label, and I realised my tshirt was on back to front. And then I wasn't feeling so smug any more.

I am not cut out for smart.
Tia

Two years ago

Two years ago this week my Goldie moved out of our house and into her own, the first young adult to move into what would become a shared Supported Living house. Not a Group Home, but her own home, her own tenancy with her own staff to support her. Better than a Group Home, we were told - and still believe - more freedom, fewer regulations, and better funding leaving more money for holidays and general life enhancers rather than just the basics.

Two years ago this week, Little Fish and Mog and I were spending all day every day giving Goldie's new carers a crash course in Goldie. Goldie herself was wildly excited by all the attention, a little overwhelmed by the huge change in her routine, and totally lacking in understanding about the permenancy of the arrangement.

A brand new house with keen new staff, lots of kinks to work out but masses of enthusiasm to do so.

Somehow, just six weeks later, the unthinkable happened and my beautiful Goldie had her hideous accident. Two years later, I believe we now know as much as we ever will about the how and the what and the where and the when. And the why is something we'll never know. I'd like to tell her story. But still the legal process rumbles on; inquest over half a year ago and now the prospect of a criminal court case later on this year. And still the need to keep events fresh, to preserve my account to produce in court when needed.

I have no interest in this court case. My daughter died. I miss her. I chose to move her into her new home - or at least I chose to move her out of my home. I'm still reasonably sure it was the right decision. But the fact remains, if I had not, if she had stayed with me, she would probably still be alive today. My part in her death doesn't call for Legal proceedings to be taken against me; how can I be involved in prosecuting others who may have paid a part? And whether or not I play a part in this, once this is all over, she's still dead. So what's the point?

Tia

Preschool diploma

I'll leave it to the viewer to decide which of these three was the most important in the eyes of a Little Fish.

Lots of children all standing facing more or less the same direction and waiting for their name to be called, their sweetie sash to be fastened, and their book of photos and certificate to be handed over.

Two years of preschool condensed into an album tied with wool and ribbon. One tiny Little Fish wobbling in the floor, a more confident child waving a giant bubble wand, a very happy little girl playing on the swings and a very serious girl perched on a stool to do water play, with three pairs of adult arms outstretched to catch her just in case.

Not a bad summary of her time there really. Staff who supported her as she learnt to trust that I would always come back. Friends who accepted her with all her little quirks and who just enjoyed having her around. Her own determination to do everything the other children were doing, and her need to have an adult hand within reach to protect, to reassure, and to rescue on occasion.

Now just one more week of this school year (interrupted by a mere four appointments elsewhere), and then six weeks of what passes for English summer before September and the new challenges of Big School.

Tia