Ladies Camera Club

6 Dec 2012

Hit by a locomotive

Tough week for me at the moment mainly with Ellie's specialist making way to round up his conclusion on some definitives on Belles plus processing the Microarray tests from the USA.  I'm reading them and there are pointers to Facioscapulohumeral muscular dystrophy, symptoms of DiGeorge Syndrome and genes that reflect Autism (I bloody knew it) - I thought I would fully embrace all of this news.  

But its horrendous.
Its all happened in a heartbeat.
I can't process it.
I can't sleep.

Instead, I'm looking up Chromosome 4q35 duplications with faults in genes FRG1 and 2, 22q11 deletions that have genes that breaks in BCR2 - 4 (I don't like reading this gene, its carries a leukeamia signal), GGT2, POM1-Like and The XQ28 faults in genes SPRY3, VAMP7 and ILR9.  I don't understand them and its going to take FOREVER for our consultant to match things up and make a conclusion.

I shouldn't be reading them but I am.
Its like wet paint signs.
You read them but you still touch the woodwork.
But Im not qualified to understand them so I have to be patient.

For years I have been desperate to try and understand why Ellie is Ellie.  Not because I would love her more or less for it.  More or less to give her a better quality of life with the right support and help - and moreover, understanding.  Its finally happening and I'm so shocked.  Properly shocked.  I feel like I have run out of oxygen.

In the years leading up to this, I have kept myself in a little family bubble to protect us from the naysayers and the specialists who have left us downtrodden.  Ive shut out the people who would not support us or entertain the very idea that there is something the matter with our daughter.  The distance between the bubble and the outside world has been at arms length.  It felt and still feels quite comfortable but I'm wondering if I should surface and pop the bubble.  Have a new intake of air, take a new perspective and free myself from that choking feeling.

I was distraught tonight and I needed a diversion myself.  As corny as it may sound, I just needed to create - let it all out.  I didn't have a plan but for the journalling words of "time to burst the bubble".    here is what I came up with, just out of my head and went with my heart:

I used the packaging from a tag set to place my paints and used my new rollers sponges which I bought for £1 (for 6) in Asda.  I grabbed some kraft paper and went to town.




These spongey, rolly things are delish


I added book paper, more borders, some masking and stamping


I collated all my favourite little masking tapes, tags, tickets and WHATEVER - and I just brought it together.  I also used these darling little stamps that I got for £2 in The Range and then I added an acetate "bubble" over my doll


And here she is - finnito.  Blobs of glossy accents still drying plus new little bits added here and there.  I finally used my gift that Marion Emberson sent me - the gorgeous hexagon dies which I shall covet forever and a day.  Thank you Mazzer xx



And some close ups, just in case you like layers and stuff


Am I feeling better?  A little.
Is art therapy?  Possibly.

Lets see what tomorrow brings............


Love
Kirsty  
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19 comments:

Anne said...

Remember to breathe, give yourselves whatever gentleness you need... and as always you'll do the moon and the stars for your Belle. With my Matty I always say like a chant when I am low... the diagnois does not define him, he is still the same lovie he was before, nothing really has changed he is as he was and will be. The only bit is that we now know that what we have been doing is just right and if new treatments or trials come about we will do those things as well. I hope you find good answers. xoxo

twinkletoe said...

Thoughts and prayers going your way Kirsty. You should not be having to go through this. Love your masterpiece though!! XXX

Pol said...

Wish I had wise words - but I do know that no matter how long you have waited for a diagnosis, no matter how actively you have sought it - the cold, hard reality hits hard. Be gentle on yourself.

Jaki Morris said...

The artwork is a thing of true beauty.

I have found with G that the more you find out the less you understand.

I wish you luck on your journey and you are loved by many. Come out of your bubble

Jakixx

jenny said...

Sending cyber hugs your way x

Bumblebee said...

Is art a therapy? I think so. I started crafting more after my mum died and then set up my blog. It was a way of doing something positive with my time. Praying that the consultants will have some long awaited answers for you. As Anne said, the diagnosis won't define Ellie, but it will help to get her all the support she deserves and help you get a little big of closure on the battles you've faces. Hugs B x

Laura said...

Like Pol I wish I had wise words. I don't. Keeping you in my thoughts and prayers x

Carolyn Phillips said...

Understanding this. And the need for some creative therapy.

Sue said...

All I can say is to hang on in there hun. It sure looks like answers might be round the corner.

Bettythebaglady said...

Thinking of you Kirsty

Carole Z said...

Wish I could have something useful to say Kirsty, but I can only agree with what those before me have said and wish you happy thoughts and send a big hug X- your artwork is lovely too, Carole Z X

Dawn said...

Just wanted to say thinking of you and I hope you start to get some answers soon!

sparklygirl-Tina said...

Hi Kirsty

Well what to say its a kind of double edge sword situation you want to know but knowing too much..... well I think your creative outburst certainly hit the mark with how you are feeling. Only you will know whether to come out of that bubble.

Big hugs to you and your family.

Tina
XXXX

Louise said...

(((hugs))) to you all. Someone i know son has Shprintzen syndrome which is linked to DiGeorge, so i understand a little of what you are going through. She had to fight all the way too.

A fantastic piece of work xxx

Bettyann said...

Keeping you in my thoughts...art is therapy..sending love your way !!!

Judi May said...

Fab artwork - yes art is therapy, it gives you the time and space to forget for a while. Thinking of you as you burst your bubble and start on the next stage of your journey and hoping the answers, you have been waiting so long for, help.

Love judi xx

susiesu said...

Yes Kirsty Art is therapy and now you have committed it to paper it is time to step out of your bubble. The time is right for you to do this and everything happens for a reason - right? Your artwork is fabulous and so is your beautiful daughter. Sending you lots of purple hugs love Susiesu xxx

SharonL said...

I dont have any words Kirsty - I just "feel" for you and yours.
I know how I felt myself when certain words were mentioned regarding My Darling Boy - you kind of know inside but you have never dared to say the words outloud and then there is this "moment" when it all comes to the surface. It is just such a very difficult and strange, defining moment.
Sending cyber hugs, as many as you can cope with! Sharon. x

Debo said...

No wise words from me either, but couldn't just read and go. I'm sure only those who have been where you are truly know what you are going through now but your writing is SO strong that we can feel your anguish, even though it can only be a fraction of what you feel. This will not define Ellie, she is still the beautiful, amazing young woman she was yesterday, but hopefully will enable you to access the help you are (and have always been!)entitled to.

Love and hugs, have a good weekend with your family.
Debbie