Ladies Camera Club

14 Jul 2008

Its all or nothing in this house

Im home.
Dog went mental.
Loved it!
Then Ellie came home.
And she went mental.
Loved it!
Between being licked to death by Eddy the mad "I chew absolutely everything" dachshund and Belle getting in from School I opened a letter addressed to Mark and I.
It was from the Doctor (in Wigan) who told me in January that, with Belle - "what you see is what you get".
That drove me beserk.
Infact I almost had a bloody breakdown.
Anyway, this new letter (from the Doctor in Wigan) was in response to a heart appointment we had in Alderhey a few weeks back and even that appointment was in response to the excellent care we received in the US.
And this Doctor (in Wigan) now sends us an email and claims he thinks Ellie has symptoms of Ehlers-Danlos Syndrome Type 6.
So you can imagine that I run straight to the PC and look it up. And classic signs of this is a prolapsed mitric valve (which she has) and other stuff (which she has).
Now I don't actually think for sure she has it because, as you know, we have been fed a lot of bull over the last 12 years. But Im losing the ability to take my next breath because Im just about sick and fed up of it all.
I really am.
As I am typing now my eyes are just about to lose their vision through tears and Ive got that pain in my chest where it feels like a nuclear bomb has exploded and subsequently ripped out my heart.
You really would think I'd be jumping for joy, though, wouldn't you?
But I am not.
I just can't believe this doctor wrote us off in January and then, on the strength of the hard work the US doctors put into researching Ellies problems, he types a letter as nice as you like and mask himself as being the saviour to the whole story.
Am I wrong to think like this?
Perhaps 12 years of faffing about has just pushed me over the bloody edge.

No matter what.
Belle is Belle and we know and love her as our extraordinary little girl who fills us up with so much emotion and love. Its incredibly difficult to convey just the right words that would convince you of how much we adore that little creature. So regardless of whether she has a syndrome or not - that kid has been put on this earth for a reason and soon enough even you will understand that too.


Anonymous said...

hi sweetie, sorry for not posting for so long, but I did read it all and having a diagnose after 12 years is actually very sad. I do am happy that you finally have it, but it doesn't take away all the pain and hurt and frustration that has it all caused you for 12 years now does it?!

love you!


Net said...

I know your super puppy has given you tons of licky kisses in the way that only a puppy can, likewise the cuddles from your lovely daughter.

Have a shoulder hon - then my ear - then go back and cuddle daughter and puppy. Now go and kick some ass!

Deanne said...

oh kirsty, i am thrilled for the information in the letter but i totally understand where you are coming from too with your frustration and upset.
Huge hugs to you, ellie and mark.
thinking of you xxxxx

Erika said...

Kirsty my heart breaks for you. That doctor deserves a bloody good smack on his over sized ego. Just as your beautiful girl has been gifted to you as a blessing, don't forget that you are a gift to her, and she is blessed to have a fierce and protective Mum who won't give up. We have been lucky to find a physician who will explain things to us, and the links between things for our daughter, and the ability to communicate in a caring an empathetic way is a skill lacking in many in the medical world. Sending you a huge hug.

Rosie (Freycob) said...

The cheeky bugger! Like he's the saviour!!!!! GRRRR!!!

Sending you big hugs hun, cuz you deserve them xxx

Julia Dunnit said... wouldn't be the loving Mum and sensitive caring soul that you are if you didn't have that reaction to this letter. 'Riding the back of the work done in the USA' was my first thought and I'm simply a concerned onlooker. As such, I see the love that she is surrounded with, and ultimately it's by this that she will measure her memories. Keep on girl, because you love her and because you can.
Julia (we met at the QVC thingy)

Cazzy said...

I can see why you are upset. Hang in there girl, someone at work keeps tellling me "don't let an a**hole rent space in your head".

Jo said...

I'd be angry too - another example of the s**t state of the NHS.

You've got so much on, and just found out today that Ruth's sports day has been moved to tomorrow, so think we'd better get together another time.

Will miss seeing you, just really bad timing at the moment.


J xx

Jo said...

That'd be the 24th? The kids would love to come and see you (the Wii and Eddy would also be popular!). Are you sure it wuldn't be too much - the kids are a nightmare when they're together...


Terrie B x said...

I can only echo what Julia Dunnit says......I truly feel for you right now...Hold you head up high...Kirsy...
Thinking of you all ...and
Sending a big (((Hug)))xxx

Hannah said...

They make you so mad don't they? I hope that you know and realise that you have a very special little girl and a wonderful bond shared between all of you 'up norf'!
You should just, as others have siad, hold your head up high and continue the wonderfully inspiring job you do so well xxxxxxx

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