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.
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