Living with Cerebral Palsy 🍋🍋

Monday 17 April 2017

Music for the soul.

On Sunday we went out for Easter lunch. Nothing fancy, just a nice old fashioned pub meal (with nice old fashioned prices, which kept Paul happy haha). The place was pretty empty, as we were eating quite early, but there was a man playing the piano really beautifully for our entertainment. An old fashioned gesture for this old fashioned place. I knew immediately that Elin would enjoy it so we sat down and watched her listening carefully.
It could not have escaped the pianists attention, how we took a while to unstrap and lift Elin onto the seats by the table, with her splints and boots getting caught on everything as we looked for a space to park her wheelchair.  It could not have escaped his attention how we watched her listening, how her eyes darted around, trying to anchor herself as to where she was and where the music was coming from. How we did not order food or dink for her and the Creme Egg brought by the staff for her was left untouched. It could not have escaped his attention that this big girl before him sitting slightly awkwardly by the table stayed silent and was not always able to look in his direction.
It did not escape his attention.
So he had a choice to make.
In light of my previous posts you will know we have not come to expect people to always engage with Elin where they may usually engage with 'ordinary' children. This guy was busy, he was working, he did not need to move from his piano chair. He had the perfect excuse not to. Yet- he made his choice and just like that, I realised for every person out there who may feel uncomfortable engaging with Elin, there's one who is happy to. More than happy to. 
He chose to come over to us and ask us what Elin would like to listen to. He chose to smile at her and talk to us about her and actually tailored his music for her. When I told him she liked Disney, he said he would like to play 'Frozen' for her. It was so thoughtful and kind of him, just a truly lovely gesture. Up to this point Elin had been largely indifferent to the music, although you could tell she was straining to concentrate on it and listening really well. What happened next was truly magical and I will forever kick myself that I did not video it.
Elin's reaction to what we have always thought to be one of her favourite songs was incredible. She literally stilled. Her eyes widened and her whole face was locked into thinking. As the familiar 'Let It Go' riff was played (how much do we all wish we'd written that song?!? There can't be a child or parent under the age of 12 who doesn't know every bar of it inside out!!), she broke into THE biggest grin you have ever seen. This was followed by peals and peals of laughter. There was absolutely no question of it being a coincidence. She recognised the song. Considering we haven't listened to it in quite a while this was even more incredible to us. How clever is Elin? It really made me quite teary and very, very proud.
I love how Elin responds to music. It's like it touches her soul. It gets to her in a way that nothing else quite can. I suppose music is universal in it's ability to move, regardless of understanding, language, age and any other barriers that dictate our abilities to enjoy other forms of entertainment. It speaks to her, she understands something in music that she cannot necessarily understand in words. Its an emotional understanding rather than an intellectual one. It's the same reason why a few bars of a certain song can reduce you to tears (I'm looking at you Bright Eyes by Art Garfunkel) yet images of atrocities on the news for example each day may not. You cannot become desensitised to music. I love that about music and I love that Elin gets to experience that and share it too.
The piano man (George) was visibly delighted by Elin's responses and played more Disney songs for her.  He had such a kindness in his eyes, he really made a difference to our experience that day. I've since looked him up and he is a highly trained musician from the Musical Academy in Bucharest. If you ever want a player for a function or family event I would highly recommend him (link below).
So it turns out for every family at the zoo, there is a George the piano man playing a different tune.
Happy Easter folks.
Hope you found the music, and the sunshine, in yours.

xxxxxxx
Mummy Times Two
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Sunday 9 April 2017

Reflections on a crazy week

Firstly, just a little thank you to all visitors to this blog who read, shared, commented on and sent me private messages about my last blog post https://mummakinglemonade.blogspot.co.uk/2017/03/to-family-who-ignored-us-at-zoo.html.
I have never experienced such a response to anything I have written before and I have been bowled over  by how it seemed to strike a chord with people. It has had way more hits than anything I have written in the past eight years and after being featured by Huff Post Parents was chosen as a featured post on the front page of  Huffington Post UK, which was awesome.
As with almost every post I write, I hesitated before hitting 'publish' on this one. Writing this blog can sometimes feel quite exposing- I am sometimes after all writing down my innermost thoughts and feelings for anyone to read. If I over-think it I can start to feel really scared that people will judge me and criticise my choice to share my views. However, usually I know deep down whether a post might just reach someone (even if it's just one person) interested in understanding life with Cerebral Palsy and that is ultimately what causes me to hit the 'publish' button.
The response to this post in particular ultimately showed me my decision was the right one, but it was a bumpy ride to this realisation. Perhaps because it has reached an audience that ordinarily my posts might not, I also experienced my first negative comments from readers, too. I'm not going to say that didn't sting a bit because it did. I'm just not used to it and incredibly stupidly, after having opened up my private thoughts for the world to read since Elin was a baby,  I wasn't really prepared for it. On refection though, it's pretty naive to think that a post can be read by so many people in this crazy world of the internet and not receive any negativity at all and I have definitely learned something with this one, which is why I'm doubly glad I hit that button.
I have mainly learned to try and stop with all the self-doubt that public blogging and sharing can bring. It's not going to get me anywhere. Why does it hurt that some random person told me to basically suck it up before likening life raising a disabled child to being Vegan? (Yes, really!!) Why do I give a rats ass that another randomer thinks that I must be a very 'lonely attention-seeking' Mum who is 'clearly bitter and jealous of other normal families' ? Ouch. I needed the red wine after that one (it wasn't even the worst but I won't give credence to the other comments by repeating them). I think I care because I've always cared too much about what people think, it's one of my weakest points. I think I care because I'm opening up my heart on here about something so insanely personal- my daughter. I think I care because it's hard to separate someone trolling a post from a personal attack on us and more importantly, Elin.  It's beyond my understanding that anyone could misinterpret what I write about Elin and turn it into something ugly, particularly when I strive to stay positive and show the wonderful side of raising a child like her. But then a lot about the internet is beyond my understanding and so I have to be honest with myself. If I'm going to put a public profile out there and publish my thoughts on this blog I can't then get upset when people disagree with what I say, however frustrating that may be. Basically, I have to grow a thicker skin.
 It's not that I feel answerable to anyone for what I write on this blog because I can't control how people choose to interpret my words. It's just so annoying and let's be honest, hurtful, when people read your post but not your words. When they choose to ignore the message at the heart of a post and instead pick apart your choice of expression of that message. My post was just written because I wanted to inspire a little confidence in other families when faced with interacting with families like ours. Nothing more. If the post finds even just one person amongst the thousands of readers who might think twice about how they interact with children like Elin when they are out and about then I'd be well chuffed with that and THAT'S what I have to hang onto and what I do hang onto.
All that said, I was genuinely moved by the amount of positive messages and comments I had about this particular post ( the support this blog gets in general is amazing and totally humbling to me). I was especially moved by the messages I had from many families like ours who said my post resonated so much with them and  made them feel they are not alone. That is one of the reasons I started my blog in the first place - connecting with others in our situation and maybe even offering some comfort to those at the start of their journey. So to those who commented with such kindness and empathy directly on the blog or via private message, or to all those who shared via Facebook and Twitter, you really helped me to remember why I open my heart about being a Mummy to Elin so publicly when I needed it most and I'm truly grateful to you. If you need me I'll just be off growing my thicker skin....(you can from now on refer to me as 'The Rhino' 😂)
Have a fabulous week, everyone! Elin's got off to a cracking start :-)
xxxx

"The worst enemy to creativity is self-doubt"
-Sylvia Plath


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