Ladies Camera Club

20 May 2009

Sun worshipper

Man we have had some crappo weather these last few days.
Its strange sitting in my office without looking to my left to see the boy laying in the sunstreak that pours through the back door/utlity area between 10.30 and 12.45, well until today anyway!He absolutely loves the warm sun streaks and I mean absolutely LOVES them. He wont budge if the door bell goes or if I open the fridge to get a drink and let me tell you, if the sun ain't shining he is in like flynn when that damn fridge door opens. He can smell ham at 500 paces!Its been a funny old week because Ive been off colour and not motivated to take pictures as such. Ive taken them for an assignment but I mean more of the spontaneous kind. I have two very beautiful cameras with two spellbinding lenses and no - not feeling the love on them whatsoever. Perhaps Im saving myself for the wedding im shooting this Saturday in Scotland (And yes, Ill sneak an up-the-kilt-shot for you all ;)).

But one thing did make me grab the camera off the shelf this afternoon for an absolute "record the moment type of shot". My belle came home with the coveted yellow enamel sports badge that she gets to wear for a whole week. We all know this kid isn't an athlete but her PE teacher nominated her for attempting to jump over hurdles (she actually strode over them!). Ellie was chuffed with herself when she came out of school. I saw her approach the car with her hand over the lapel of her blazer and I knew there and then she had been awarded a badge but I acted surprised all the same. You need to bottle moments like that, you think?

Prior to picking her up from school I had a call from her Special Educational Needs co-ord. She expressed concern over Ellies swimming and lack of hip movement. She also expressed how concerned they are about the way her feet are forming. Now I look at this two ways. I see it as sweet and kind and caring. But I also see it as "What the eff can I do? We have been to hospital over 170 times in 13 years and we are still non the wiser as to what is going to be done". I explained to her that I will mention her concern but doubt that anything would be done because every time I express my concerns actually nothing is really done about it. All we get is "See you in 6/9/12 months". I begged the teacher to write to the hospital because a formal letter from a place of authority (such as her school) might have some bearing on the matter. Because I sure as shit sit there every bloody time and talk, talk and talk and its like im saying "mworhakjhdah dasjhgf dsjhfjsdfq lqweuerhj". You can see the specialists thinking "you're just a mum, shut up - you know nothing. We are the experts and we can choose whether to take an interest or not. We are gods, we have the right to take pity or not, to treat or not, to like you or not - your daughters life is in our hands and we wonder if you think its YOUR lucky day?".
God, its driving me up the bloody wall.
So, anyway, she has a biggy hospital visit on the 9th June....like a really big "biggy". Hopef I will come across as not speaking Mongolian to the doctor and that he might sit there, holding my hand and professing all his undying adoration into the welfare and health care of Ellie. But this was the doctor whom, last year, gave us a right ear bending for going to the USA for medical investigation. He was very upset that we went at all - he said that we hadn't given him a chance (understatement of the year) But you know, when someone offers you a lifeline, you take it. That Someone was Nurse Rooty and dr Denton in Nevada. But he sat there and was really spitting feathers about the whole adventure and although it wasn't funny at the time, it was worth watching the blood vessels on his head almost exploding with rage.

So yep, really looking forward to that treat of a hozzy visit. I might take armoured plating to protect me when I tell him to shove his Neurology where the sun don't shine. We are binding our time, time is good...we have lots of it. Its a shame Ellie doesnt before she reaches adulthood and still have to deal with all her ailments, undiagnosed.

Still, on the pozzy side she got her enamel badge. She is the most beautiful caring and loving creature I have ever set eyes on and she is loved more than anything and anyone has ever been loved in all the time that love has existed. And whilst I'm being a big soppy Momma, I want to share you something really personal about what Ellie said to me once or twice when she was about 8 years old. Ive only told one person, outside my family, this before but one day I was feeling all sad and was laying on the sofa. Ellie came into the room and she came up to me and cupped her hands round my face and she looked me straight in the eyes and she broke my heart when she said "Mum, I love you so much it makes me want to cry".
sob, sob, sob.
So you see, underneath all my doom and gloom, lays a heart etched with those very words; that's what keeps me going.

18 comments:

Anonymous said...

Oh how darling of her, what a little treasure.
Marion :)

stephanie howell said...

i love you. i do.

weewiccababe said...

oh, thats me bubbling now. She's an absolute angel Kirsty.
xx

Jo Power said...

What a lovely and kind little girl and lets hope everything goes well for you both on the 9th. Keep positive and cuddle your ray of sunshine. xx

Marie said...

Those pesky kids - they know just what to say to melt your heart right outta ya!

Belle is such a sweet little lady. I wish with all my heart you could get answers and resolutions and actions taken for her.

Yey on the sports badge! Go Belle.

xMx

Rosie (Freycob) said...

Well done Ellie on the sport badge. It's not the winning that counts but the taking part and giving it your all!

And I'm welling up here now! Out of the mouths of babes.....

x

Lynn said...

They know how to say the right things sometimes (and it's all the more special when it's only sometimes :)

Jen said...

Aw! *sob* She's a darling, that's for sure. I'm so sorry the hospitals aren't giving you more answers, I can imagine how frustrating that must be. HUGS xxx

Houston said...

She is so beautiful, inside and out, and Darling you are too. I know this isn't easy, the doctors are shite and I pray this visit will go better. Until then I shall be cleaning the house down the way. Love you tons and congratulations to Ellie on her badge, she deserves it.

Sue Abbott said...

Oh KIrsty, these are the special moments that stay in our hearts forever, precious............
Sue xxx

Bettythebaglady said...

Ellie is a "back door patient" What's that mean? Well I was told at a conference on Fibromyalgia it's when the patient comes in the front door and the doctor wants to go out at the back door.She sounds like a wonderful girl and you are a wonderful and loving mother. If you could wave a magic wand you sure as hell would and if I could wave one for you I would. It's your life and her life so enjoy it all. With much love BettyXXX

Houston said...

please check my blog I left something for you ;)

Anne aka Anniescraps said...

Kirsty, you are so loved and loving :-) Dear heart may the doctor LISTEN and RESPOND appropriately. I can so understand yur frustration and understand the overwhelming love that makes the struggle such a must.
As forthe sweet english rose, I am proud of you too... what a tremendous effort you made!! You earned that badge. Big smiles from across the pond.

Anonymous said...

yey to the curlygirl x
lulubelle x

Cazzy said...

Well done Ellie, you are so clever! Kirstie, lost your photography mojo? That is a shame, but it will come back in buckets full.

I know just what you mean, my docs do not like that I took matters into my own hands, saw someone they don't recognise as a doctor still, get drugs from the USA.... I either get a lecture, or a lecture every time I go! Trying to avoid going now, don't want to take the drug they want me to, haven't looked into a NHS specialist to be referred to to be told I am fine and don't need what I am taking.

Cazzy x

. said...

this dog same as my dog^^

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