The force is strong strange in these two.

Take one busy, active, intelligent six year old boy who lives, sleeps and breathes Star Wars. Add one determined eight year old girl who has no idea about anything Star Wars related, apart from the fact her friend really really likes it. I should probably rectify that. Maybe.

Anyway, it's not a particularly likely partnership. But somehow it works

 Biscuits and cakes get baked and sampled and smeared across the kitchen floor

 Neighbours and passersby are perturbed by the appearance of two Jedis; one who doubles as a Ninja without extra pay.

 The grass gets crushed into submission, to teach it to grow when the gardener is away.

 Miss Mog gets to sit and listen and giggle mightily all day long.

And I have the satisfaction of a small child fast asleep before half past six in the evening.

I'll spare the Ninja Jedi the photos of his stint as hairdresser, good as he is with a very girly purple comb.

And I'll spare the world the sight of the Doctors/Police/Ambulance/Hospital/Dark Side mission which seemed to involve bare toes, many arrests made with the aid of a bandage and a yoyo, and a largish box of pencils.

But a good time was definitely had by all. Friendship. Strange but true.

I'll leave tLP with the last words "Mummy, Mummy, he has left something behind. He really has left something behind, look Mummy, he has left behind ME."
Tia

Brownsea Island

28 sleeps

And we finally have clearance to fly. Oxygen booked for the flight if needed, airline reassured that neither girl is likely to die on board, both girls measured for special flight chairs, wheelchair measurements set up for the ground crew, all essential equipment (bar the external battery for the ventilator, but we think we have finally given the engineers the correct information) approved for either use on board or else transportation.

One GP with the patience of a saint, having been phoned all too regularly over the past weeks, to give explanatory letters, carefully worded prescriptions, additional medical information, forms for the airline and forms for the medical supply companies and letters for the security people. Each letter or form she's filled out and returned within 24 hours, generally calling to check wording or tweak details. She's on holiday herself now; definitely deserved.

One medical supply company happy with the wording of the prescription and accepting a photograph of the letter so I don't have to try to post it out.

Two cats booked to the cattery, both sets of vaccinations fully up to date.

US dollars sorted, and at an exchange rate which gives us effectively one free taxi to Disney compared to the exchange rate when I started placing the order a few days earlier. Or ice creams all round, or something.

Weird visa ucsis thingies all filled out and accepted.


Hopeful arrangements made to meet long-term but never met Floridian friends; we've been bloggy friends since before either of us had blogs, part of the Christian Parents- Special Kids emailing list since before either of our adopted children had come home. That's a long journey to share from such a distance.

Blender borrowed from a friend who bought it when she was over there herself a few months back; we will be able to feed Miss Mog when we're out there. Still to do: work out what to feed Miss Mog on the plane; even if I could transport a day's food in 60ml bites (which would, actually, be reasonably simple if I just froze it in individual syringes), I'm not convinced security would be very happy about it. Hope that Boots sell sufficient baby food pouches to see us through the day? Bring some dried baby rice and hope the aeroplane has milk and fruit juice? Create something pumpable and put her back on the pump?

Amazingly, both girls are now completely off pump feeds. I've kept the pumps; time enough to return them once they've both managed major surgery or illness without needing them. But is it going to be hot enough in Orlando that either or both girls will need water drips to keep them comfortable? Or can I leave behind all the plastics, and rejoice in the extra luggage space?

Today I finally managed to order the oxygen we ought to have on standby in case Miss Mog needs it. This was the very last major piece of the holiday puzzle. There are still minor bits and pieces which need to be done. But I think, provided I don't lose any of the letters between now and then, we might actually have completed all the specialist part of our holiday preparation. Apart from the packing, of course.

It might be time to start looking forwards to a week in the sun!

Tia

Blackberrying.

There's something about Autumn which brings out the dormant domesticity in me. After a summer of shoving stuff here and there and settling for satisfaction when the piles aren't higher than my head, the girls go back to school, and the sharp September sun shows all the dust and detritus.

I suppose the sensible and truly domesticated woman would take advantage of that sharpened sight, and get tidying. Well, I did, for a while. But between starting this post a few days ago and basking smugly in the newly clean and polished sitting room and kitchen, reality rudely reintruded, and now the house is more or less back to looking well lived in. But that's ok; we do live here, after all.

And anyway, this weekend we just had to get going on a more interesting and definitely domestic job; rumour had it the blackberries were ripe. And ripe blackberries wait for no woman.

Memories of childhood, empty ice cream cartons, a field with nosy horses in it, and endless brambles, twice as high as my head. Sweet juicy berries, staining fingers and clothes and lips a rich deep purple. And then a kitchen with jams bubbling in the preserving pan, and the promise of blackberry and apple crumbles, sponges and pies in the months ahead.

It's a little bit more complicated these days. Heavy traffic on our previous roadside stops; dangers and probably polluted. And the fields with their horses and cows all accessible only by wishing gate or stile, which is to say, not accessible for our family as it stands.

We headed for Jarn Mound. Many brambles, most accompanied by stealth nettles, but very few ripe berries. Still, by picking diligently, we were able to keep more in tLP's bucket than she was able to eat; retreating to the car after an hour with enough for a couple of crumbles if nothing else.

And then, honour satisfied and memories built, the girls and dropped the grandparents off at The Spot (Field at the top of Sunningwell for locals interested!), and drove slowly from the top of the field through Villages and winding roads to the Village Hall at the bottom of the field. And there we found the mother lode. Branch after branch, bursting with berries, at a height lockable from wheelchair or on foot, no need to shinny up fences or bend double. And by the time Mum and Dad had picked over the top field, we'd very nearly filled our own bucket again.

So hurrah, a freezer full of blackberries. Top tip: when freezing blackberries, spread them out in a single layer on baking trays, freeze them like that then put them in a freezer bag. They stay frozen singly rather than all clumping together, and I can now shake them out half a dozen at a time for smoothies if I wish. Perhaps I'm the last women in the western world not to know this tip. But in case I'm not, and on the off chance the one remaining didn't-know-that woman is reading this, I offer a further top tip. Before carefully and lovingly spreading out the blackberries in a single layer on your baking trays, check that the trays you are using will fit in your freezer. Thank you.

So, the house is dusty and cluttered once more, but motivation is somewhat lacking as it is about to be torn apart in order to give us a functioning boiler once more. Hot water and heating are kind of useful these days. There are tufts of wool lying around because I've finally finished Great Grannie's birthday present. There may be the odd gingery clump of dough in a corner somewhere, from where tLP made off with the remains of the gingersnaps. But for today I'm looking at the memories and the coziness, not the lack of polish. I hope the girls are too.

Floridaaaaaaaaaa!!!!!

The deed is done. We broke the news. The Little Princess has known for a while that we are going to Florida. But there was a day, a few weeks ago (because I am shamefully behind on blogging), when we gathered friends together and, having wound them up sufficiently by rubbing their noses in how much we were looking forwards to our wonderful week in Florida, and how much they'd be missing out on by not coming with us, we finally told them they were coming too.

I think it's safe to say the news went down well.

A few weeks on, I think it's also safe to say our hearing has recovered.

But even now, I'm not sure the children really believe it. Every so often, tLP grabs me and "I got a question for you. Are they Really Coming? Really Really? But on the Same Place? To the Same Hotel?" And the squeaking is mighty.

These are the children who can turn tLP's wheelchair into the wildest ride there is. The young Jedi Knight, and three Princesses. And we're setting them loose in the land of Disney. May God have mercy on our souls.

Tia

It's starting to feel a lot like Christmas

There's magic happening in the windows of the cake shop
Little Princess climbed up on Mog's lap to get a closer view.

Father Christmasses being created from tubes of icing
Christmas pudding cakes getting a covering of custardly icing.
And an edible Albert Hall. Yum.

At home things are smelling a little seasonal, with gingersnaps and pears and Christmas candles.
Fresh pine, so much fresher when it's genuine from a tree and not masking the toilet bleach.
Last night we had one of those magical moments where I want to stop the clock and freeze time. A lovingly if not beautifully decorated tree, the Nativity finding this year's home safely on top of the piano, the playroom lit by twinkly lights and our Advent Candle, and both girls singing together - Little Princess with the words, Mog with the harmonies, and myself on the endearingly (ish) out of tune piano. Away in a Manger "Sing the Lord Jesus again, Mummy please" roundly endorsed by Mog with a big "Ahhhhh" of agreement. And so we did. And again, and again, with brief and mostly unsuccessful forays into Once in Royal or In the Bleak Midwinter but mostly coming back to the children's carol and rejoicing in its combined familiarity and wonder.

And I can't freeze time, and bedtime has to happen, and morning comes and the days go on. But if I can't freeze it, then perhaps recording it will serve to remind me of its sweetness.
Tia

Making Memories.

They're changing Guard at Buckingham Palace Clarence House
tLP and Mog went down with Alice Mummy and Grannie and a pile of children from Helen HouseDo you think the King Duchess of Cornwall knows all about me?
Sure to dear, but it's time for teaSaid Alice Tia.

Better photos, proper photos, big fat "I have a camera so vast it takes three people to hold it" type photos in the links underneath.

Spot the Mog

Spot the Little Princess shaking hands with the proper Princess. "Is she really a Princess, Mummy? A real one?"

It isn't every day you get to help the future Queen of England decorate her Christmas Tree. Better photos on Grannie's camera, but Grannie's camera has gone off with Grannie to her next meal out, and I know people were waiting to see things here.

We drove. Something involving lots of police and flashy lights slowed us down considerably on Edgeware Road. I remain tremendously grateful that I get to visit London less than once a year, and that I don't live there. Huge admiration for those of you who do. And I say we drove; I drove to Helen House, two very nice Helen House volunteers drove us the rest of the way.

We arrived. Policemen climbed into our bus to check we were who we said we were, soldiers paraded up and down outside the bus, and eventually we were allowed through the gates, under the archway and into Clarence House.

We took our coats off and had them squirreled away into a cloakroom. I too would be tidy if I had a fully staffed cloakroom with several people just itching to take my coat and fold it for me every time I took it off.

Room number one; many press-type people, a regiment of London Cab Drivers bringing local Underprivileged Children, Sister Frances and Tom from Helen House, a smaller team of Royal staff, and a smaller but very present group of children.

Room two; a giant Christmas Tree, a real live toy soldier with a sword, and many decorations. Lots of opportunities to help HRH hang the decorations on the tree. It goes much more easily when one has a soldier with a sword to hang the highest decorations. And a super small boy to adjust the lower ones until they are just right.

Room number three; a beautiful dining room with Christmasly party foods. A Duchess, inviting tLP to partake of the chocolate stars. And a Little Princess insisting instead on steadily munching her way through the ham sandwiches. A very giggly Mog making the most of the atmosphere and definitely NOT kicking the Duchess, although she did kick her switch very nicely to say hello. Hello. Hello. Hello. And Hello. Ah, the limitations of a single switch.

And then back into the bus, and a cold drive home. Two girls full of Christmas food and Christmas spirit, with Buckingham Palace Gift Bags and immense chocolate pennies. More presents inside the bags which the girls were too tired to explore. And a long drive.

Back to Helen House carpark, into our bus, home, and into bed, slightly splashily after a long day out.

For Mum and I, the memory of tLP refusing Her Royal Highness' chocolate in favour of what I assume was Duchy Ham. Of Mog, helpless with giggles, grinning up at the living Toy Soldier standing behind her. For tLP, perhaps the memory of hanging a decoration onto the soldier's sword, and watching him hoist it high into the branches of the tree. Or having a flag fight with the toddler in the chair next to her. Or eating Smarties on the way home. And for Mog, lights. Smiles, faces, lots of admiration of her dress, and the chance to meet a real live Princess. For the Duchess? I don't know, but I hope she enjoyed our company.

Thanks to all who arranged it and especially for thinking to invite us.
Tia

Playing with photos

It's Monday. The girls are back at school, Great Grannie is back at home, and I have the house to myself and no special agenda beyond making bread for 25 before we go to Helen House. And I have 130 photos from our week away.

I have been playing.

And, after several hours of tweaking, I have finally beaten the printer into submission, forced it to talk properly to the computer, and persuaded the pair of them not to auto-crop my photos into the shapes they wanted to make them.

Hurray for quiet days.

Thinking though of friends whose days are not so quiet at the moment; ill health in themselves, their children, their parents, complicated legal stuff around the world and closer to home, and I wish I could send them all to a quietly empty autumnal coastline for some rest and refreshment.

Tia

Now and Then

Then
And now
Now
And then
Then
And now
Then
And now
Tia

Fun in the Park

To the anonymous commenter who asked if I knew what a happy child with CP looks like, I give you one haapy child with CP, playing with her sister.



And to those who ask why a tiger, I refer you to Matt - he left a lasting impression.



The flower is inexplicable. But beautiful.
Tia

Thomley Hall

Friends of ours suggested we meet at Thomley Activity Centre. I can only assume their daughter then decided she didn't fancy a day out with us, as she promptly had herself admitted to hospital with a chest infection.

So, being the kind, supportive friends that we are, we went without them.

First stop, the playrooms. Avoiding the huge soft play den, we found a girl's paradise, and whilst the Little Princess paused to consider which of the 37 dolls she needed to play with, Mog decided to bling up a postman's uniform.
I think it might just catch on, myself.

Dolls selected, we escaped outdoors and had fun with sand and water trays. Mog sat and dabbled her wrists* in the water as the LP exercised the babies.Another indoor interlude, to make bird feeders (lard and birdseed smashed into a pine cone; nice multisensory stuff) and bird scarers (CDs and coloured paper and trimmings on a kebab skewer; good lethal stuff), and considered the irony of making both items for the same garden.

Back out into bright daylight for fun on the bed swing
and a picnic lunch. Hot coffee, hurrah.

Both girls declined the aerial runway which was a shame. We did manage a fine improvised concerto for drainpipe and ballbearings (you probably had to be there), and a sniff at the sensory room, before heading back inside to have a go at some woodwork. Mog made a dolphin and tLP, an elephant.

And then outside again for the highlight of tLP's day.

Lean forwards

Lean backwards

And I can swing all by myself!

Tia


*Signs you might have cerebral palsy no. 307: you can most easily reach water and sand with your wrists rather than with your fingertips which are curled in towards your body.
Sign no. 308; your arm twists out so the white forearm is more tanned than the back of your hand.