Eight.

Eight years ago today.
One little lost baby with beautiful eyes.

In my arms
I picked her up eight years ago, and didn't put her down for another couple of years.

Tears, vomit, spasm, pain, seizures, the misery of a little bundle of woe who didn't know who she was, where she was, what this world was or what was happening to her.

And lots and lots of love.Smiles first, and then an interest in life
New skillsnew family members
all adding up to a little girl, less little now, with an enthusiasm for lifeand a determination to rule it!
Eight years ago, the ubiquitous "they" gave me a big list of "she'll never do". And, well, I suppose they were right in a way. You never have sat up, rolled over, stood by yourself, walked or talked. You will always be dependent on others for your every need, you have indeed become bigger and heavier, you've had those dislocated hips and now it looks as though your spine is on its way towards a more interesting life too. You do have those seizures they warned us about, and you have breathing stuff and feeding stuff no one mentioned.

But so what?

You are unique. You manage to extract every possible bit of enjoyment out of anything you do. There aren't many children who would get away with clouting toddlers, telling their teacher they don't want to do the lesson, teaching the professionals how clonus can do the opposite of what's expected, and showing everyone how just because you happen to be in a wheelchair, and happen to have a whole host of medical issues, there's no real reason why you can't climb mountains or fly off to Florida or rule the world around you.

Love you, little girl,
Tia

Saturday Silliness

Some days, you just know it's going to be one of those days.I'm not sure what gives it away.
Tia

Take three sausages and a bowl of rice

Add tomatoes, onions, cheese, and a bunch of Girl Guides.

Factor in a newly fitted smoke alarm in the church hall, and decide to move the cooking competition into the carpark. Pray for good weather, remind the girls to bring coats, consider lighting options and decide that the darkness adds an extra dimension. Discover that Brownies with Sparklers are an extra complication.

And then enjoy Vesuvius

Mix and match for the picky eaters patrol
Enjoy the "better than my Dad's" tomato risotto ring.
and appreciate the optimism of the cunningly disguised carbonised sausages in the "pretend it's a pizza" entry.
Hand those same girls chocolate pudding, chocolate, chocolate biscuits. And watch as three patrols make a chocolate cheesecake style desert. And one group create this
Poo on a plate, with biscuits.

Much washing up - and one group not only washed and cleared their own stuff in record time, but then happily helped the others - now that's living the Promise! Only casualties the teatowels - I would love to know what it is about the snowy whiteness of a crisp clean teatowel which provokes the apparently irresistible urge to use it to polish greasy gas stoves, mop floors, clean mud off shoes, and finally wipe tables. Still, sharp knives and no cuts. Rationed cooking equipment and no fights. Rearranged patrols and no arguments. Raw meat and no food poisoning. And at least one girl planning to repeat the meal for her own family's dinner later in the week. Not bad!

Tia

Mog v Moggie

Camouflage cat's cunning plan to stay on the bed in comfort misfired when she chose to disguise herself as a knee cushion.Mog won the bed. Eventually. But camo-cat got her revenge, puncturing the mattress with a delicate claw.

More chair love

Please imagine that above this sentence there's a picture of a beautiful Mog in beautiful clothes, sitting beautifully in this beautiful chair. There would have been, but life intervened. Sorry.

But ooo, look at her chair
Look at the most amazing stitching on the seat
and back.
Next time, I want them to stitch that seat cover rainbow out in different rainbow colours - how beautiful would that be?

Little Fish wanted in on the camera action, but refused to get up for it. She is struggling with the concept of switching the Nippy off and her own breathing on again in the mornings at the moment. Quite happy to lie there wide awake letting the ventilator take away all the work of breathing. Very odd to be having conversations with her whilst watching the settings which are telling me she's making absolutely no effort to breathe for herself.
I switch it off and unplug it, and she screams loudly and longly. Which would be bad, except that to keep up the volume on the screaming, she does have to take in large and deep breaths, and I figure that's probably a reasonably good way of kickstarting her own breath control once more. Slightly worrying that she seems to be needing it though.

And now for something completely different. A feline sacrifice to Euterpe.
Lovely.

Tia

New Chair

A long way off being anything like decent photos. But, we put her into it at 11.15, and there she stayed, apart from a few brief interludes, until 5.45.
Upright, albeit at a slightly different angle than before.
I realise she looks a bit dog's dinnerish, but the chest plate is deliberately wonky to avoid the gastrostomy, the headrest is tweaked to accommodate her head slamming seizures, the collar is back after a lengthy absence because it turns out that gravity is stronger when you sit more upright, and we didn't somehow magically fix her head control issues earlier this year. I'm not responsible for the twists and creases in her trousers and hey these really are grotty photos (I am responsible for the grottiness of the pictures, as opposed to the state of the small girl inside them).

But, for all that, we have a wheelchair again. A wheelchair the bus driver loves because he can clamp it safely and easily. A wheelchair we love, because it will hold Mog in a much better position. A wheelchair Mog loves, because when she stretches and goes into extension, the chair extends with her, folding her back up again as she relaxes.

I'll try to get some action shots later this week. But for those with enquiring minds, it's a Wheelchair Services own version of a FoamKarve backrest and seat cushion, fixed onto a JCM Triton Dynamix seat, fastened onto an Otto Bock Discovery wheelchair base.

This gives us custom moulded seating, adjustably tensioned dynamic backrest and footplates, tilt in space, recline, and a chair I know I can push uphill and over grass. It's been 14 months since Mog started having such problems with spasm and not managing in her old wheelchair, 6 months since we sat down with wheelchair services to try to find a solution. If this does turn out to be as comfortable for Mog as it appears to have been today, I think it will very nearly have been worth the wait.

Tia

The Power of No

There's no mistaking Mog's clear "Yes". There are a good few which are indistinct, but a big powerful enthusiastic "YES!" is unmistakable even if you don't know how Mog communicates. Her "No"s have been a little harder for people to pick up. They're harder for her to shape, especially when she's happy, and they're silent and fleeting, so harder to spot if you aren't watching closely. Recently though, everyone around Mog seems to be better at finding her No. This is good. Well, mostly. It's been causing a few problems at school apparently.

"Mog, can I sit beside you?"
No.

"Mog, can I just push you through to the hall now?"
No.

"Mog, let's get onto the bus shall we?"
No.

"Mog, we're going to read a story now, alright?"
No.

Interesting times whilst people adjust to the reality of a child with attitude. And whilst Mog adjusts to the reality of a life where you do sometimes have to go along with the majority even when you express your own opinion.


Little Fish, too, is learning the power of No. Hers and mine. I ask her if she wants something, she says "No!" I walk away. She screams, I suggest she might mean yes, she yells that she doesn't want it she doesn't want me, she doesn't want any of it. I walk further away, she says she is ready for my help, I come back, she yells "No!" and I walk away again. This gets old fast.

She's learning my "No" too. We have a deal, LF and I. She can lie in bed with her bedroom door open at night as long as she lies quietly and goes off to sleep, rather than calling out and joining in with the general household conversation. So far, so fair. Except that she's now taken to objecting to having the lights on in the hall and bathroom as she thinks she needs it dark in order to sleep. Sorry, LF; that would be a No. You don't get to control the rest of us to that extent, and whilst you may be happy to go to bed at 5.30, the rest of us do need to use the facilities on occasion after that.

Meanwhile my own "No" is being challenged elsewhere. A friend kindly pointed out this Skull and Crossbones Slanket, which she feels would make an ideal winter wheelchair coat for Mog. Why do I have the feeling my No may have to become more flexible than theirs?

Tia