Ladies Camera Club

24 Jul 2012

Fields of Gold

Its been bittersweet today.  Im not exaggerating.

Today was Ellie's last appointment at Alderhey hospital namely because she is 16 and needs a transition to adult services.  Its not been fun with this hospital but I do put that down to Ellie having an unknown condition.  The relationship with her neuroscience specialist has been somewhat stunted and fraught with "come back in 9 months, we still don't what the matter is with her blah blah blah".

I think, in the grand scheme of things, we have been patient in all these 4 years and yes, I've had my flip outs and whiny moments but as a mother who completely adores her daughter, I reckon I was allowed to do so.

As we arrived in the consultation room, the doctor looked, briefly, through her notes, asked a few questions  and said that the next course of action was to perform a biopsy.  But I reminded him they did that two years ago.

"did we?"he said.
"yes" both Mark and I confirmed.

You see..... this is what we are up against.

The rest of the appointment was just covering old ground, raking up the coals from the past 16 years and the last 9 months since we last saw this Doctor (12 months, come to think).  Things have changed with Ellie, particularly the curve in her scoliosis, the arcs in her feet aching which is having a knock on effect with her knees; they are bearing the brunt of the shift.  This needs addressing and fast.  Luckily the OT and PT are such wonderful beings, they are on with the solution as I type.

As he wrapped up the appointment he said "well, she definitely has a myopathy but which strain, we just don't know".  My jaw dropped.  To be honest, this was a bit of a friggin revelation because its never been fully confirmed before and now, as we depart this hospital, he comes to mention it?

No sooner had this sunk in did he then follow up with "But, as neurosciences has taken a hit with funding, we can't investigate it further".  Talk about giving your kid the answer to the 64 million dollar question one moment only to be snatched it away, 2 moments later, was cruel.  VERY CRUEL.  So there we have it.  16 years to be told she has an undiagnosed myopathy and written off the list in one fail swoop.  Spectacular.

We were relieved to be leaving today.  For the first time in years, I left without crying.  HOORAY.  But I know everything is going to be ok because we just look at her and know that no matter how much the NHS fail her, we won't.  Ever. 

On the way home from the studio tonight, I passed this barley field.  The cloud forming over the brow was just GORGEOUS and the light was incredible.  I rushed home, picked Belles up and drove her back to the field for a little shoot.  Namely to mark the end of a ridiculous era in her life but, more notably, to mark the beginning of a new chapter.

She wouldn't really look at the camera.  The fascination she had with the barley heads was so interesting to watch.  She kept stroking them and running her hands through them as she walked past.  But who cares, the fact that she looks so grown up and so unaffected just brings tears to my eyes.

She wouldn't leave the tracks in the barley but as she head off for a little wander, my intrigue led me to consider "what was she thinking?" and "what expression she had on her face?".

Those heads of barley really were so fascinating and as she played, I zoomed in on her curls and let her be.

the colour wash on this image really highlights her stunning lips.

I love this angle as it hones in on her attire.  She looks super grown up in this image but would she take her fixation away from that bloody barley?  NO!!!

And then I noticed that she was counting and splitting the hairs.  The autistic tendencies that Ellie often displays tells us that she over thinks and analyses and tries to work out a patterns in all that she sees.  Im still waiting to hear her conclusion but I bet, by the morning, there will be a gorgeous fact that she can tell me.

The start of the day was bad and the end of the day was good.
My kind of day.

Hope yours was good too.


EmmGee said...

Great pictures Kirsty - I can't help thinking how like the heads of barley Ellie's curls are! EmGx

Sue said...

Stunning photos.

So sorry you have had such an uphill struggle.

debby4000 said...

Oh I love the pic with her back to you.

Debo said...

Wow! Beautiful photos! Ellie looks so grown up - and beautiful!

(bloody doctors!)

SallyB said...

Kirsty Wiseman. I blooming love you. You are a wonderful Mum. xxx

Sara said...

WOW she is such a beauty - fantastic photos Kirsty, just simply fantastic. If you ever come to New Zealand let me know. All the best Sara

Judi said...

Stunning shots Kirsty, goes without saying!
Sorry you had such a bad start to the day, glad your day ended well though xx

Jane said...

"But I know everything is going to be ok because we just look at her and know that no matter how much the NHS fail her, we won't. Ever" Beautiful, and if I was on Facebook I would be hitting the like button right about now. You are an inspiration Kirtsy. And I was once told that special Babies are sent to special People and you prove it hun xxxxx

Anne Washington said...

Sweet lady I haven written here in eons... there are so many parells between our beloved children. Matthew is still a child while your abe is becoming a young woman. Matthew, if you even remember, has a form of Mitochrondrial Disease that is muscular myopathy. It often goes undiagnosed and many times the muscle biopsy is negetive especially if they use frozen tissue to determine it. Perhaps you might benifit from an on line group that has been very helpful to us and infact has many members from England. I've no idea if what I am writing is of any help. the site on facebook is: United Mitochondrial Disease Foundation (UMDF. They have a family group, you would have to be ask to be allowed on as it is a closed group. Mito Action is also a great web site. That all being said I hope no offense is taken, I just thought I should say something since I know many have had false negatives or doctors that didn't realize what they were looking at since it is a fairly new diagnosis and very few doctors who specialize in it. There are some very good Mito Specialists in England who WOULD know. Forgive me for my intrusion it was done with loving heart.

Anne Washington said...

Oh blast I just wrote you a long comment. It disappeared, alas. I have not written here in a long time, I was anniescraps at studio calico many moons ago. My Matthew and your sweet daughter have much in common, though my son is younger. He too has muscular myopathy, it wasn't until last year we finally got the Diagnosis of Mitochrondrial Disease as the cause. Biopsies are taken of the muscle tissue as one of the tests. These tests can and often do give false negatives especially if the sample is frozen. It is a recently acknowledged disease, infact 10 years old. There are very few Mito specialists and many neurologists and genetics doctors do not know much about it. There are many variations and types. For all I know you may know all about this and I am wasting your time. I just know what it is to be lost in te sea of not knowing so could not leave these words unsaid just on the off chance they help. Autistic tendencies go hand in hand with many cases as well. There are some wonderful Mito specialists in England and I know some ladies who are from England with this particular disease. I gained much info from this face book site : United Mitochondrial Disease Foundation (UMDF) There is a closed family subgroup that is great, you would have to ask to get in, but they always allow that. Many are people with children and adults who are suspected cases as well, so they are on a similar journey. I know that many would know of the resources in England and could help you out.
Forgive me if this is an old path. I just wanted to share incase. Also the difficulties of inaccurate testing. Done with loving care...

Marie said...

I just adore that second photograph! Soooooo beautiful that little lady of yours.