Living with Cerebral Palsy 🍋🍋

Monday, 15 February 2016

Why I lie to my Grandad...

Elin has started half term by visiting her Great Nanny and Grandad.  Elin and my cousins two gorgeous babies bring their Great Nanny and Grandad so much pleasure and joy, I'm so glad we are still able to visit them in their own home. They like nothing better than to talk about all three of their Great-Grandchildren and my Nan's favourite thing is to regularly take photo's of them all down to the Bingo to show her friends :-) I know how lucky I am to still have my grandparents in reasonable health, so may of my friends are not in my fortunate position in their mid thirties. Despite their clear adoration of Elin, it must be quite difficult, I think sometimes, for them to fully appreciate her condition and the impact of it- or maybe I should say the severity of it. My Nan and Grandad hail from a time when children with severe disabilities simply did not survive. Or, they were removed from their families and left in special homes or hospitals until inevitable tragedy- something that seems completely incomprehensible in our modern world, horrifying even. This means that as my Nan and Grandad were growing up and until well into their adulthood, they would have had little or no experience of severely disabled children and probably adults too.  Modern medicine must seem incredible to them . I suppose it was fight or flight in the 1950's - a doctor either made you better or you didn't survive. So this odd halfway house we inhabit where Elin can live and be (mostly) well, but not 'better' and with no prospect of being 'better' is a strange one for them indeed. As such, the prospect of Elin being 'better' is not something they are ever fully willing to relinquish. My Grandad finds this particularly difficult, probably because my Nan's nursing background affords her a slightly deeper understanding of the medical aspects of Elin's life at least.I'm not saying they don't love the bones of her as she is because of course they do and any intelligent person can see Elin's limitations and absence of ordinary milestones over the last seven years. But it's fascinating to me that they still think one day 'something' might turn up- a new medication, a new surgery, a new discovery. My Grandad asks me, in his wonderful naivety, why we cannot take her to America to get her 'fixed'. It breaks my heart. Not because I can't cope with the questions, but because I can't give him the answers he want so desperately to hear. That there is definitely hope, that 'you never know'.. Elin might one day walk, or talk. That stem cells research is 'doing so much these days'. So a while ago I stopped trying to explain and I went with it. Even though it goes against every fibre of my being to do so. Yes, maybe one day. Yes, who knows what stem cell research could achieve, yes, we will never say never. Because if I was 84 and I had lived through a World War, toiled down a mine working harder than any teenage boy these days could ever comprehend just to feed my family, witnessed many tragedies in my life time including great loss of loved ones and the world had become an alien place full of phones and wireless connections that I didn't understand and it was tricky to get about and life was daily feeling just a little bit harder.....what would I prefer? A lie that draws a smile or the truth that draws a tear?
I would want someone to lie to me every time.
So yes, Grandad. One day, in the future, when you are maybe no longer here, we will get our miracle on 34th street.  Elin's going to be made better and we will tell her how much you loved her and everything will be ok. I promise.
You never know.

Mummy Times Two

Sunday, 7 February 2016

A big step

Hello poor neglected blog!!! All is ok in the house of Elin right now, despite a bit of an 'iffy' couple of weeks. Elin's had some sort of weird bug or virus which hasn't affected her too badly but has left her quite dystonic and a bit off colour. She's missed a few days of school off and on and the virus has finally come out in the form of impetigo on her nose and ear!! We are well used to the evil impetigo, it has previously affected her ear and cheek- we've never seen it on her nose before. Inside her nose, on her upper lip, yes- it was so aggressive once it left scars :-( But never ON the end of her nose leaving her looking a little like Rudolph!!!! Thankfully as soon as this appeared she seemed to get a lot better in herself. It's a good job too, because she had a very important event that she needed to be well for! Her sisters 18th birthday. Yes, we can hardly believe Caitlin is 18. But, in the blink of an eye she is an adult. It's left me a little emotional and I'm not fully sure why?! There are so many things Caitlin has to look forward to and such an exciting new chapter of her life, there's nothing sad about it but that's just me, I don't like the end of things. I don't like change- have I mentioned that? ;-) I guess I will just have to accept it!
I thought you might like to see some photo's from the festivities! We had a lovely time and Elin was thrilled to be out so late! Caitlin has many other exciting things to do this week including a trip to NYC with her best friend!!! So happy birthday Caitlin Angharad, big sister extraordinaire!!!
Can't wait to see what the next chapter will bring.....once I've stopped crying......;-)

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