Drakefest 2015.

This weekend Daddy Drake was away fleetingly visiting family in London and since Elin is, as you know, not the best traveller we had to reluctantly stay at home and re-create Glastonbury (what else was there to do this weekend?). Elin and I decided on Friday we would have a festival of a weekend and enjoyed pretty much wall to wall coverage of the biggest festival on the planet. On Saturday we spent a lot of time chilling out together on the grass outside doing NOTHING but listening to Glastonbury on the radio with the sun on our faces. (Pretty much the first time we have been in the garden properly this 'Summer'- yeah, Im STILL going on about the rubbish weather) To be honest Elin is the perfect festival goer, she has music in her soul, enjoys hugs with strangers and has access to a  pretty big stash of drugs at all times. So this weekend Glastonbury came to Holly Cottage and we didn't even have to get muddy, wee in a field or pay twelve pounds for a burger. RESULT.
It was so relaxing and lovely, we had the best time and were very lucky to get VIP passes to the area at the bottom of the garden where the hot tub resides YEEEEAAAHHHHH! A VERY special guest appeared to top it all off and we chilled out with festival spirit running through our veins and the slow acquisition of a bit of vitamin D in our skin. FAR OUT, MAN. (They say that at Glastonbury, right?). For those wondering, Elin proved her impeccable taste yet again by favouring Florence and the Machine, Ella Eyre, Gregory Porter and Jessie Ware. Her favourite BY FAR though, of course was Lionel Ritchie's set this afternoon. 'Dancing on the Ceiling' tickled her pink and 'All night Long' too.  What a LEGEND. Lionel was pretty good too. Ha. You can't buy that sort of intuition I tell you. Go Elin. My Endless Love. See you in the garden next year under the apple tree, yeah?

What is this shiny warmth on our faces? Oh! SUN!! Yayayayay!!

 Concentrating hard on a repeat of Florence's headlining set via radio, enjoying some outdoor resonance board action whilst she's at it. Those big drum beats particularly interesting to her! 

Obligatory festival selfie, pre daisy chain headband making.

Special guest and VIP area to finish the day. Take a chill pill.

Drying off in the sun. Awesome time. Maybe one day we'll get to do the real thing? Like, when we win the lottery and we can stay in a giant winnebago with a flushing toilet and a shower I mean. Obvs.

Mum, you didn't seriously think I was staying in my own bed when Dad's not here did you? You don't sleep at festivals anyway so who cares ???? I will not conform to the rules of society! I am a free spirit, man! 

YAAAAAAYYYY my Daddy's home!!!!!! Big huggles!!! 

We didn't do anything while you were away Daddy, honest.

Have a good week folks. You got the love.

xxxx

Let It Go

Elin preparing for a 'Frozen' show at school! Too cute not to share, especially as she clearly recognises the song! Good listening Elin! x

Because of you...Fathers Day 2015

 I wrote this last year. But since I have a fair few new subscribers this year (thank you!) I have decided to post this updated version today to celebrate Fathers Day. There aren’t enough words for what Paul means to us and what he does for Elin (and for me) but sufficed to say I still, even after seven years, count myself incredibly lucky that he is her Daddy. Every single day.

Because of you.

My ears hear your laughter, your guitar, daft songs that you make up about me, and the words 'I love you' a million times over. Every single day.

My eyes widen, then look wildly around as soon as I hear the back door bang, because I know you are home from work, or back from your bike ride. I greet you with the widest grin because I missed you SO much. Every single day.

My mouth feels a thousand kisses and, when Mum's not looking, tastes ice cream and yummy things you sneak onto my tongue. I love it, it makes me laugh with you.  Every single day.

My nose gets 'beeped' to make me grin and smells things like the banana you peel just because I like it, or the new flowers in the garden you planted for especially for me. Every single day.

My hands are held and squeezed, over and over, when I'm upset. And you help me to touch things, anything, everything. My favourite is when I feel the pages of my bedtime story with you. Every single day.

My arms are wrapped around your neck whilst you carry me, to wherever in the house you are going, because you want me to come too and can't bear to leave me on my own. Every single day.

My legs are splinted and strapped because you are worried about the turns in my ankles. but you talk and talk and talk while you do it, in case I don't like it, because you cannot be sure. Every single day.

My feet are tickled and stroked, especially at bed time when there are no socks. You squish them and call them chubby trotters and I giggle. Every single day.

My body is cuddled to bed and I lie by the nightlight you fixed on the wall, because you worry I might be scared of the dark and I listen as you talk me to sleep. Every single day.

My ears hear your heart when I wake in the night and have to lie with my head on your chest, before I will trust sleep to envelop me again. Not every single day. But sometimes and when I'm poorly. Because I just want you.

How lucky am I to have such love. That all of these things and much more happen to me.

Every single day.

Because of you.

I love you, Daddy.

Teamwork

Three years of Elin's Sports Day - Team Egypt 2013, Team France 2014, Team Wales 2015.

So around came the annual morning of watching the sky, praying it doesn't rain and watching Elin, praying she will sit in her chair long enough without an attack of dystonia in order to take part in at least one race at Sports Day. Last year wasn't so successful- Elin spent most of the day under a gazebo having firmly decided she wasn't for taking part (I think she gets her attitude towards exercise from me! ). This year, happily, was a different story, and though I knew it would be hard to beat the great Egyptian costume of 2013, Elin was looking pretty on-point in her Welsh footballers kit complete with wheelchair flags and inflatable, squeaky Welsh Dragon.  Although the wind 'was a bit keen' as my Mum would say, which Elin is never happy about, she did really well in her chair and had a wonderful afternoon. To top it all, team Wales won! Hurray! Aunty Karen was there to cheer on Elin's victory and even took part in the Mum's race on my behalf. I was DYING to take part obviously, but to be honest I had the wrong bra on. You know what I mean. Oh, and the wrong shoes. Either way things could have got very disastrous, so I decided to play it safe.  Plus, I'm saving all my energy for the London Marathon.

Anyway, as usual Elin's Sports Day was pretty humbling, amazing, gorgeous, cute and a tad emotional. I remember I was absolutely TERRIFIED going to her first Sports Day (she was team Spain, in 2012. I can't find a photo-boo!) . I feared it would be a sad occasion for me and that I might be forced to smile as I watched my daughter take part in a wheelchair race with her class mates as all the mainstream parents looked on, thanking god that their child was not in THAT race and feeling sorry for the parents of the children who were. HOW WRONG was I??? It's laughable now that I used to think Sports Day was going to be some sort of jarring, heartbreaking day that I just had to get through, but you have to remember that I had no frame of reference for anything like this at the time. Luckily for me this is not the way  Elin's school do things and it took all of five minutes on that first Sports Day four years ago to realise my fears were completely unfounded.

The children march from school onto the field in their various teams, resplendent in their countries' colours and covered in props (my favourite this year were probably the home-made 'cork' hats team Australia were wearing). There is no segregation, only inclusion. You would do well to spot the children from the ALN unit amongst the mainstream children as they arrive in a flurry of noise, chaos and laughter. There is no dreaded 'wheelchair race'. The children from Elin's school simply join in with each year-group race depending on their age. The children from mainstream assist the ALN children, which is an honour they actually argue over, such is their enthusiasm to help and want to 'be a good friend' as the stickers adorning their T-Shirts suggest (In a move typical of Elin's school to encourage inclusion and not simply condescendingly praise able bodied children for being friends with the ALN children, BOTH lots of children had these stickers, something so simple and seemingly small but SO BIG, and so right,  to those of us who notice). This inclusion is not exclusive to Sports Day, either. The children from both parts of the school integrate at various and regular opportunities. This is   clearly an invaluable experience for both sets of children and you don't have to spend long in the company of them before realising the relationships between them, fostered and celebrated by school staff, are anything but forced. It's a mutually beneficial and happy arrangement that I wish every school in the country could emulate. Sadly of course that is impossible so I can only hope the parents of the children in the mainstream part of  Elin's school realise what a fantastic opportunity their children are getting and what an amazingly rounded outlook on life they are experiencing , free from fear or accidental prejudice or ignorance, and that the parents of the ALN part of the school realise the same thing :-)  If the reactions I saw on Sports Day to the beautiful interaction amongst the children were anything to go by, then the parents are more than aware. It really was a wonderful atmosphere. No sympathy, only empathy. Support, friendship, love and understanding. (Is that a Cher song?) Anyway, as you can probably tell, Sports Day at Elin's school is something special, particularly because it's not special at all :-) It's just how it is. 

Go Team Wales!!!

Beautiful x

Amazing news item/video about a dance class in New Jersey for children with PMLD. I think Elin would enjoy ballet! Especially since they get to sit on knee's instead of in chairs :-)

http://player.ooyala.com/iframe.html#ec=JiNDdsdTq9qxwOWyH6at47jfcTvnvuu8&pbid=9ae34776f76145da969becdeb205e6a5&docUrl=http%3A%2F%2Fwww.huffingtonpost.com%2F2015%2F06%2F15%2Fballet-recital-therapy-center-new-jersey_n_7573388.html

Park life

                           

Yikes! Things have been a bit deep and meaningful round the blog lately haven't they? But it's so great to have a platform to share my thoughts and feelings about raising Elin and I promised myself when I started the blog over six years ago I would always write from the heart, so that's what I alway endeavour to do- come rain or shine (did you think I had exhausted the rain metaphor in the last post? Surprise! I hadn't!!Ha) . Lately I've been thinking about what makes writing a blog feel better than writing a diary and I concluded that it's because a diary is secret, and a blog is anything but. It's a two-way street. The support and understanding I have had from people reading the blog is something I never could have achieved by keeping a book with a padlock on it gathering dust under my bed. Sharing on social media means my posts reach the eyes of a myriad of people I have never even met, often with similar experiences and feelings. I guess a problem shared really is a problem halved, even if my anxiety really can reach stratospheric levels when I actually think about the fact that my inner most thoughts and feelings are being poured over by strangers or anyone that wants to read them. Thanks to those of you who keep returning to the blog, even though it's me who writes the blog it helps us as a whole family to know we are not alone in this crazy roller coaster of a journey.

The above photo's were taken on Sunday, at a local country park. Elin's Dystonia has been brilliant these last few days (since we increased her Diazepam although there is no real way of telling whether it's pure coincidence or not) so Elin's Aunty Karen and I took advantage and whipped her off for a go on the swings whilst Daddy Drake sorted out the garden. She absolutely loved the swing and I absolutely loved the fact that these accessible parks are springing up in lots of places, with wheelchair accessible roundabouts and other inclusive equipment. She even sat in her chair whilst we ventured around the whole park though we were pretty sad we didn't see our old favourite Rusty the Pig :-(. We're just keeping our fingers crossed that the Dystonia stays away- we know it won't forever, of course. But at least for a bit longer- it has dogged her pretty badly over the past few weeks- not fair. Enjoy your week folks, keep your fingers crossed for us that Elin gets to enjoy a few more trips to the park before we have to think abut the nasty Dystonia again! xxx

Stormy Weather....

Been a bit neglectful of the old blog again lately! Prompted to write this after hearing a Mum of a child like Elin declare that despite things being hard, she wouldn't change her child 'for the world'. It got me thinking, this. It always does, as I hear it often and when I do a huge, suffocating wave of guilt washes over me, You see, I'm not one of those amazing Mum's who says they wouldn't change a thing. I would. I'd change all of it, I'd change everything. I mean, I get the sentiment I really do.  I can't imagine life without Elin and I wouldn't want to live in a world where I wasn't her Mummy. But change? Yes. I would never wish to change the essence of Elin- she is a joy. But I would change her circumstances in a heartbeat. I want to see Elin run and dance and play. I want to hear Elin speak and laugh and sing. I want to share things with her as she grows up. I want Elin to have had the childhood she so richly deserved, the life that was waiting for her in those drastic, dramatic and devastating hours before she was born and it all slipped away from her. I want to be an ordinary Mummy, not a 'special' Mummy. I want an ordinary family life for all of us.  Sometimes I want it so badly I could scream with all my might into a pillow, or collapse in the middle of the supermarket. But, it wasn't to be and if I'm good at anything it's turning a negative into a positive. Elin is the most positive thing in our lives and the lives of all she touches so that part is easy. Our hearts could burst with how much we love her, how proud we are of all she has achieved and how amazing we think she is. She consumes our every waking day and she is our life.
Yet...in the middle of the night...or on a bad day......or when Elin is in pain or unhappy....or we have a stream of endless appointments ahead....everything is far from easy. I'm acutely aware that most of you with children will see our life and what happened to Elin as your worst nightmare- why wouldn't you? It's hard living the life of someone's worst nightmare. It's hard, harder than you could imagine to grip hold of the positivity and not drown in the swamp of what could have been for Elin. The life she could have had and the experiences we could have given her. How can I say I would never change her? I would give everything I own in the world, sell my soul and even relinquish my GHD hair straighteners if it meant I could go back in time to the 22nd July 2008 and wave a magic wand. Not for me, but for her. Ok- a bit for me. A tiny bit for me and for Paul. But mostly for her. But sadly, in the absence of a Tardis, this is impossible, so you have to get on. Train your brain not to think about it, which mostly, it doesn't. Only sometimes...when she's sleeping......and the life you never lived, the sliding doors you didn't make it through, the parallel universe of the other Elin's life weighs heavy on your mind and in your heart and slaps you across the face with it's vicious finality. During these times, I can't do certain things. I can't be around other little girls and their parents (something Paul finds particularly difficult). I can't go shopping, I can't think very much about anything at all. I can't fake a smile and I can't see my friends. Luckily for me, these slaps across the face do not come very often. Or maybe they do, but I can deal with them more easily now. Because ultimately, as regular blog readers will know, my overwhelming feeling regarding Elin is luck, how incredibly lucky we are to have her in our lives. She has taught us far more than we can ever teach her- how many parent's can say that? But, if Im acting weird or changing arrangements or being naggy at any point for seemingly no reason- please forgive me. I'm just waiting for the slap to stop stinging. Im holding Elin tight and I'm crying into her hair. I'm waiting for the storm to pass because it might not be a good day to dance in the rain.
But it will pass, it always does. It can't not, when you see Elin smiling up at you in her beautiful innocence. She is my reason to keep dancing. And you know what? Sometimes embracing the storm in what feels like a very black and white world means you end up unexpectedly landing in a place of colour you never knew existed in your heart.. "far far away, behind the moon and beyond the rain"..... well, you know the rest.  I love you so much Elin. The rainbow in my cloud.

Elin today. A little wild flower in the garden, waiting for a storm -pleasingly a literal storm, not a metaphorical one ;-) Have a good weekend folks. Keep dancing.
xxxxxx