We are not where we planned to be. Right now we should be enjoying a seaside holiday on the north coast of Germany. Where we are, is back on the neurology ward of the hospital near to G’s parents, 7 hours further south. R has had a horrible 36 hours of seizures.

R really doesn’t travel well. Invariably, she arrives at her grandparents in Germany very much below par: pale, listless and lacking her usual sparkle. So when I start on my usual speech about how smart, alert and curious she is – in imperfect German – it’s perhaps unsurprising that family and friends here are hard to persuade.

A few days before R’s seizures started we were at dinner with an old friend of G and his family. J is a Professor at the same hospital that R is currently being treated. A man of little vanity (to the exasperation of his wife I suspect), he has decided that a monocle is the most practical form of reading correction for him in his clinic. Mostly he wears more conventional reading spectacles outside work but on this evening he had apparently forgotten to bring them. In response to his enquiry about R’s schooling, I started ranting on about how we consider her to be cognitively far better than most professionals and how she has demonstrated her literacy using her Tobii Eye Gaze. I recognised the signs. He didn’t really believe me. Undeterred, I borrowed my brother-in-law’s phone and showed him the pictures of R from this blog. He took one look and his monocle dropped out onto the table. R roared with laughter.

Post Script

I have been known to grumble about the NHS.  It was my impression until now that German healthcare was better funded and possibly better organised.  We arrived at the hospital on Friday night to find a single junior doctor was manning the entire children’s accident and emergency department.  There are no doctors on the ward and no neurologists on call.  I phoned home yesterday (Saturday) and was able to speak to R’s consultant, who fortuitously was on call. He immediately sent an email for the attention of the doctor in Germany regarding R and how he would wish her to be managed.  It’s not ok that there are insufficient nurses on UK wards to provide the basic care (feeding and hygiene) that a child like R needs.  But on balance, I would prefer to provide that care myself if it means that specialists are available on site when they are needed.


2 thoughts on “Monocle

  1. I love hearing your stories about how R shows people what she can do! I do find it disheartening that you have so much trouble ‘proving’ to people that she is ‘in there’! Especially when they’re qualified professionals that are supposed to understand their patients etc. You sound like a great advocate for your daughter, and R sounds like a real delight. I hope that R’s seizures clear up and she feels better, sending good-wishes to you all!

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