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My dream list

In ascending order of importance, probably mostly descending order of likeliness

BK to sleep tonight
BK to give me some space
Energy to cook 3 proper low fat, low GI gf/df meals a day, everyday
Energy to brush teeth, wash, put on face cream and deo and dress everyday
To wash, brush teeth and put on face cream and pyjamams every bedtime
To supervise BK the above two the same (minus face cream)
To de-clutter house and get BK's stuff easily labelled so carers can put things away without her getting anxious and shouty (at me)
To catch up with my paperwork
To write all the case fics from the oral stories of 2010
To write the crackfic crossover stories from BK's illness and hospital visits this year
To stop being so oversensitive to noise and EM fields and not have grand mal seizures
To not need to collapse after loading dishwasher and wiping surfaces in kitchen
To not shake
To not have my muscles, including heart on ones around eyes, vibrate
To not have burning nerve pain
To not have muscle pain that feels like I've been beaten up
To have the strength to restrain BK so I don't get beaten up!
To be well enough to go to church
To be well enough and have time to meet friends for coffee
To have more friends
(small unobtainable dream) to be well enough to work a few hours a week on a check out in a supermarket to get out of house and away from being mum and carer and have a laugh with other people on my coffee breaks
(large unobtainable dream) to return to Oxford, do my PhD and teach and research and afford to send BK to the Unicorn and then to Headingdon School for girls
(another large unobtainable dream) to write professionally
For the neurotypical world and particularly the benefit system, state schooling and social services to have better understanding of the variety of autistic spectrum disorders and how it isn't just Rainman and boys!!!
For thier to be better understanding of ME/CFS too
To be well enough to see LF's gig and not act like a complete scardy cat and look like a dork (see previous rant today for details)
Finally, finally, to know that however awful that all this is, however much my faith and my ability to pray and meditate, and however hard I find it to pay for all I need to cope with BK and my illness leaves no money for charity anymore, and howver much I tend to forget these days how much worse many people are than me (selfish bitch that I am) that God is merciful, that He loves me, that I will get to paradise after all this.

Is all this too much to dream for?

(Don't want a debate on the likelihood of the last one - we all have our own beliefs and I respect everyone's as long as you don't want to push them on me or insult mine)



( 4 comments — Leave a comment )
Jul. 27th, 2012 05:34 pm (UTC)
*hugs you to chest and will not let go until 50% of your wishes come true*

As my dad says, 'you can do your best and no one can ask you to do no more'. and its true. I do hope things are getting better and better each day, I also know that your writting is awesome and that I look forward to reading your work in book form one day.

I wish there was more that i could say, but there not, what you go though kinda make the pain i have and the worry i've got seem small.

I'll keep you in my preys and hope that your home life will be good soon. I also hope that my words are of some encouragment to you.

XXX:-) (-:XXX
*lets go slightly so you can breath* sorry me little raggydoll.
Jul. 27th, 2012 07:11 pm (UTC)
*hugs* back really tightly.

Thanks for your prayers. We really need it. Things are going from bad to worse here right now.
Jul. 28th, 2012 10:47 pm (UTC)
I can't think of any other comforting words to help you but as the elders say in my congregation 'throw your burdens upon Jehovah God and he will bless you'.

I just hope things will get better realy qiuck for you.

*not letting go*

Hugs from your RagDoll friend. XX
Jul. 29th, 2012 09:09 am (UTC)
Not only is God merciful, but our troubles are his. I am sure you have read the poem 'Footprints in the Sand', but we all need a reminder that we do not have to carry things alone sometimes.
The wonderful thing about the Internet is that we can make friends without leaving home and, whilst these friends may not be able to offer practical support, they are people who share your interests and appreciate your talents.
On a practical note, it must be difficult for you to meet other parents, so I wonder if it is worth asking the chair of the PTFA or equivalent if one of their members would be willing to visit and keep you updated on school issues/ events. Or if they have a Parent Support Adviser, they might be able to put you in contact with other parents with similar issues. PSAs can only get involved if parents approach them, but it could be a good link as their role is meant to be based around your needs.
You did say you were trying for another school and I am probably teaching my grandmother to suck eggs, but I wonder if you could get one of the doctors to name the school on a statement application or a letter, on the grounds that a special school would be better equipped to deal with BK's medical issues, given the affect of her autism on compliance with treatment and the affect on her autism of her medical conditions. Main stream schools are not geared up for complex conditions.
Remember, however bad today seems, in a year's time it will be a blurry memory and in ten years time it will be forgotten. What will be remembered is your love and care for BK.
( 4 comments — Leave a comment )



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