asparagusmama (asparagusmama) wrote,

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purple red, birthday, dead...

Okay, nothing or no one is dead, it just rhymed...

I had promised myself that today, probably much later, I would post how today I would be wearing purple with a red hat that doesn't suit me, how when I go out I'll put my stick on the back of my power wheelchair and then drag it along railings...

And then I would point however old I feel I can't be silly, I still must be boring an responsible, i'm still the one to cook the gluten free, dairy free food, to chase homework and all the boring thigs that being a mum of any child, and then the stuff on top...

Oh, the stuff on top. Hey, after my last posting my daughter has been so anxious, so hyper, we've had virtually no sleep all weekend. All saturday was difficult and the house looked like a bomb had gone off in an art factory and we were surrounded by paper, pastels, charcoal, pencils, smudges on walls, Dr Who videos, Morse and Barbie DVDs, DS Barbie games, Barbies with their hair dyed blue - and when are those civil partnership Barbies having their damn wedding, they've been engaged for months since we found them, together, in a charity shop, in a little bag with clothes - their trouseaux? - including two white wedding dressing and two ball dresses and a little Shelly complete with bridesmaid dress. They live in the Barbie camper van becasue the 62 other Barbies won't have them in the box...

On the back of the camper a little rainbow flag proudly flew until saturday when my daughter ripped it up in deperation of the lack of sleep switch and stress of school.

I've typed an entire paragraph on Barbies. How tired am I?

So, she crashed at 0420BST Sunday and I tidy the house until 0830, have a bath, make brunch, wake her up, feed her and conjole and bribe her out to Oxford where in this stae she is easier to cope with, although I had to buy a new book and a new fairy. Slept on bus both ways, sat in Costa for two hours drinking iced lattes and reading DW while she drank whatever it is Costa call frappacinos and trying to make the fairy fly.

A promise kept, sedative taken, asleep early, me too. Got up and she had been awake hours, but in bed with Rumer Godden books and the DS, so... off to school only to come home angry and anxious and reporting she had fainted in her CATs and spent entire day in Learning Support reading teen chick fic and she wasn't to be tested and will be in the bottom stream for everything, even though she is doing GCSE maths now in Y7!

Agreed to sedative, but fell asleep in the bath so I had to wake her and that was it, five minutes sleep and she is off... Aagh!

All this, I suppose is same old, if I had been able to rest while she was at school, but the thing is, my Granny collapsed this morning and my Granddad is suddenly, after being her full time carer for over 16 years (my Granny had encephalitis and was in a coma and has lost most of hr memories and has no short term memory at all) very frail and my Mum was going up to take him to the GP but had to phone an ambulance and has spent all day in hospital with her Mum, being asked every 30 seconds why is she there while my Granddad is at home feeling guilty and frail. As anyone who has read another of my journals will know, my Mum doesn't do patience or illness well! She is an only child.

I may moan but I love my Mum, and I'm worried about her and when I spoke to my Granddad I wanted to cry, he felt bad that Mum couldn't come over to deliver his card and present to me...

As if my birthday mattered.

Last year my daughter disappeared from primary school and I was bedbound with a bug, a raging temperature, a hacking cough and a knock on effort on the ME so bad I hadn't been able to feed myself. three days later, forcing her once again to school after a night of sleeplessness and attacking me, I collapsed on the bus and was taken to hospital - which is why the stupid head teacher was able to make a referral to social services to tell them I was home educated her to look after me!

She left me in bed hungry on my birthday telling me to f-off. She hit me and refused school and told me they were making her like that, oh, and guess what, she'd not been so difficult to cope with since I home educated her until this very weekend. And now, in her autistic way, she's decided her great grandparents are dying and it's cool that they will go together so they won't miss each other. I don't think it's that bad, they are just ill. Granddad is worn out and Granny - I don't know, she had to have a blood transfusion and is having another tomorrow morning.

Thank God for all those of you out there that give blood. God bless you x

The upshot is, it's my birthday and I'll cry if I want to. For the last two years my birthday has = hospital. Why shouldn't I cry?
Tags: autism, barbies, birthday, daughter, family, hospital, me/cfs, not sleeping, oxford, school
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