Saturday, 27 September 2014

The 'Look' of disappointment

There are lots of aspects of epilepsy which I hate but I think possibly the worst is ‘The Look’.

 Maybe it’s just me but I have found that there is a certain look which people give you when they are risk assessing in their head how your epilepsy is going to impact on a situation they are in control of. 

I like to think my epilepsy won’t stop me from doing anything and I am always really open about my epilepsy, I have been very lucky because my family and friends have always been really supportive and understanding.  But it’s when you get into the world of businesses and the main reason for it I guess is the suing culture we now live in. 

So I’m talking about when I sat in my occupational health appointments at work and they say ‘sorry you aren’t safe to work with the children on your own in case you have a seizure’ and then at the gym when they said ‘sorry I don’t think it’s safe for you to use the equipment more than walking in case you have a seizure’.
So why do I bring this up now?   Well finally at our adoption appointment last week, they said we would be put forward straight away if it wasn’t for my epilepsy but ‘they’d have to speak to their manager’ accompanied by ‘the look’.   

The Look is also usually accompanied by ‘are you sure you don’t know what triggers my seizures and I have no warning?’ with a slight air of desperation.  I would give anything to know my triggers and to get a clear warning, but the fact is I don’t, asking me over and over isn’t going to change that. 

I suppose I should in a way feel good because ‘the look’ isn’t one of judgement, more one of disappointment… so I fit all the criteria for whatever they want really well, they just can’t say yes because I am too much of a risk. 

The thing is there is nothing I can do about the possibility I might have seizures (and even if they are now controlled on Keppra it will be years until anyone can really rely on that because my seizures are so far apart) so there is nothing I can do about ‘the look’ other than not to even try for these things, but I don't want to do that either.

I guess that’s why underemployment is so high in people with epilepsy… there’s only so much of ‘the look’ you can take.

Thursday, 18 September 2014

Our little Welsh getaway

We managed to get away for a week to Wales.  We were really lucky with the weather; it didn’t rain the whole week we were away which was fantastic.  It was just so lovely to have some family time doing the things we love together.

We went back to Porthmadog where we went with my Grandad when I was just pregnant so it was a really special trip.  Some of you may be reading this without my back story so just a quick recap.  When I was 4 weeks pregnant I had a tonic-clonic seizure.  The week after we went away to Wales with my Grandad to explore where he used to go on holiday as a child.  I was very close to my Grandad and sadly he passed away 2 weeks before Riley was born which made the first few months quite difficult.

But our week there was amazing, we explored the beach and as Riley loves to tell everyone ‘caught crabs’! But seriously crabbing was so fun, I don’t know why I’d never done it before.  Just a tip, crabs love frankfurter sausages (not pepperami though).

I’ll let the photos tell the rest of the story :)

Getting the train to the top of the mountain


 Fun at the beach

Riley loves animals

CRAFTY IDEA: We collected shells from Shell Island and made little presents to take home to everyone (just remember to boil the shells before you stick them together so they don't smell!).

Angel rays as Riley plays on Black Rock Sands, I'd like to think it's Grandad looking down on us enjoying the place he used to enjoy as a child.

And you can't go to the seaside without having an ice cream treat... yummy!

Wednesday, 17 September 2014

27 month check time

So Riley had her 27 month check and all is fine.  Her speech has really come on now and she is learning so quickly.  She comes out with things that just astonish me, it makes me think where or how did you learn that?

They talked about squints and we've already had an appointment at the eye hospital because she does have a slight squint, but her eyesight is fine so they are just monitoring.  As for eating and sleeping everything is fine with that.

The next hurdle is potty training and we have now bought a potty training book (someone should really write one which isn't so pink and cringe-worthy!). I'm not sure Riley is quite ready yet but hopefully in the next few months.  She sits on the potty a lot and we have had some success so that is a good start I think.

Here's a little picture of her playing with her train set.

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