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.