My girl

Can
Bake a cake.
Ice a cake.
Giggle wildly at her uncle in a hat.
Feed her tube fed sister.
Brush her sister's hair.
Sort out her own Nippy (ventilator) mask.

But my girl cannot
Put things in a bin.
Get through a day without a meltdown somewhere in it.
Accept that "Stupid fat smelly Mummy" isn't likely to result in extra cakes and tv privileges.
Notice when she is forcing her chair through walls and doors.

Jolly fine cake though.

Running away.

Half term took us by surprise. Too short a term, and too much tragedy in it. A week coming up with no plans other than hospital appointments; too much thinking time and not enough entertainment.

So, we skipped out of town. Fled the sleet and snow for the surprisingly sunny and not at all frozen Arctic wastelands of the North. And came to visit Miss Mog's very best friend.

A day to get here (ish). A day to get to church and then pootle, and today a day for Big Expeditions. Alnwick Gardens may never recover.

Fountains, cherry orchards not in blossom but with the hint of good things to come. Aconites and snowdrops breaking into flower, signs all over that Winter is over and the Spring is here. Beautiful green willow forming a roof over an accessible maze, zig zag pathways to zoom down, and an accessible tree house with rope bridges. And cake.

And friends, good friends. It's good for the soul.

Tia

Cupcake cheesecakes with sour cream topping.

For Sue.

This is an amalgam of several recipes, so please excuse the variety of different weights and measures.

Crush half a packet digestive biscuits, mix with melted butter and press into bottoms of 25-30 foil cake cases (paper ones go soggy). Bake 10 mins at 180c.

Meanwhile, mix 700g cream cheese with 1 cup caster sugar, 4 tbs plain flour, 1/2 cup sour cream, 1tsp vanilla and 3 medium eggs. Start with ingredients at room temp and beat well.

Spoon into cake cases and bake for 25 minutes at 180c. Leave in oven 30 minutes after cooking. Cool.

Sour cream topping - 1.5 cups icing sugar and 1/2 cup butter. Ish. Buttercream anyway, beat until fluffy with 2 tsp vanilla. Add 2 tbs sour cream, beat well - more icing sugar if you want it thicker, more vanilla or sour cream for more flavour.

Dollop onto the cheesecakes and spread out.

I had 5 cheesecakes left without topping; I plan to cover them in nutella at some point.

Salted fudge brownies are from the tastykitchen blog and very delicious.

Just one thing.

Disability awareness at Guides tonight. Miss Mog missed it, but her two schoolmates turned up with wheelchairs to assess accessibility. Various girls turned up with info gleaned from variously disabled siblings, we turned egg cartons into beginner brailers, had feely things and see-y things and chocolatey things (because everything can fit chocolate). We had miming, and signing, and exercises in tearing paper to show how different we are and yet how alike. And we borrowed Mog's communication switches.

And then we challenged the girls to think about what they'd choose to say, if they had to be limited to just one message on a switch as their only voice.

Some of them had instant answers. "Help me I can't talk" seemed to be a fairly common instant response - until I asked them what they needed help with, and they realised they couldn't say. Several girls went for something along the lines of "Hello", and one of the leaders decided on "Thank you."

A few chose specific messages, ones which they realised wouldn't be needed all the time, but which they thought would be the most important thing they'd need to communicate. "I'm hungry" and "I need the toilet" seemed to have equal place there.

A couple of the girls who are used to switches decided recording music or family activities would be the most important thing; linking home to wherever else you might be going, and using the switch to share news without words; a conversation starter rather than a set phrase.

And one Guide who has difficulty with words at times decided she needed a switch with "Mummy!" recorded on it. Which made me think, because I'm not sure that's an option we've ever offered Imi, and yet how many children do end up stuck on a "Mummy mummy mummy" loop for a while?

Mog's switch says "I've got something to say" - although none of the girls could hear that message. She has a new switch coming very soon. We use her switch as a springboard; she gets our attention and then her talking book has far more possibilities for her than anything accessible via single switch would give. And we've stayed with that message, knowing it works, but perhaps not really thinking about the alternatives.

The Guides have made me think. So I'm passing the challenge over to you. If you could only say one thing, what would you choose to say?
Tia

Even If

Helen House

We're here. This is respite. Someone else handling all the medications, all the medical needs, all the tedious bits. Leaving me to be Mummy.

We're here. Someone else is in charge of keeping the girls health, happy and occupied, meaning I can be with my friend, who is also here, sadly not for respite.

We're here. And possibly only here will I ever sit knitting and watch two girls, not related, bouncing on giant therapy balls and inflatable horses. Bounce, bounce, bounce, pause. "I'm really sad because my brother died." Bounce, bounce, bounce. "Yes, I'm really sad because my brother died too." Bounce, bounce, bounce. Grin, grin. "Come on, you be tigger and I'll be a fairy princess."

We're here. And possibly only here can two children share a grief, yet be children too. Weep, and then shrug it off and get on with the important business of being a child, and get on with the important busy-ness of being a child at Helen House. To grieve, and to play, and to be able to share that with someone else in the same position. To stay in pyjamas, but to get to McDonald's with a grandparent; to watch a film and to just drop in on a dearly beloved and precious brother. To share final moments and utter sadness, and then to have a rousing game of bubble monkey princess.

We're here. And only here, only at this time, can we drink wine together as adults, and we weep for the loss of another beautiful child, whilst celebrating life, treasuring memories, and being hideously inappropriate (but funny).

You cannot know this joy without knowing this pain. And it is my birthday, and yesterday my friends buried their daughter, and today we're here and my friend's son is in the Little Room. And the staff are worried, because we are here for respite, and I don't think they can ever understand. And they would spare this pain

But it is right that we are here. And God is here. And it is hard, so hard, to watch my friends in such loss. But it is so very right to be here at this time.

We're here. And this is Helen House. Our friends are here. And strangers here too. Respite families, end of life families, first visits and last visits. Love and pain and laughter.

We're here. And I wouldn't be anywhere else.
Tia

Essay on cats.

TLP spent the whole afternoon writing this. Much sharpening of pencils, checking of spellings, and questing for more to write.

Each new sentence admired and praised, all praise received with smiles and hugs and sparkly eyes.

And then, as I come back into the room to suggest taking it to school to show her teacher, because it is quite possibly her Best Ever bit of home writing, I found she'd ripped it up and thinks its rubbish.

I don't. But apparently telling her that makes me all wrong.

Tia