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Tuesday, 25 October 2016

No thanks.

Today is a dreary day Autumnal day. I love Autumn but it's definitely better in the sunshine. It's kind of misty and foreboding otherwise. It reminds me, with the rusty coloured trees and grey streets below the ashen sky of the film 'Halloween'. I feel like there should be a solitary child meandering down the road with a red painted wooden cart, the wheels squeaking eerily as you wonder anxiously what lies in wait. That's what today is like. The dark mood is entirely apt, because we had some bad news today- we discovered that somebody we know had passed away. It was sudden, and unfair. This was not someone we knew well, but someone very involved in Elin's daily life. Someone who showed her kindness, who held her hand and stroked her cheek and sang to her when she needed it. Someone who made her feel safe. One of life's good people. The news slapped my face like the sharp October wind. Life is unbearably cruel. Life is short. It's hard. Live each day being thankful for everything you have.
Something I'm finding difficult to do this week.
Thanksgiving is approaching and I am glad I'm not American and I don't have to give thanks. I'm not feeling thankful. I should be. This makes it worse. Elin is still doing brilliantly. She is having a lovely half term. Thank you, for that. But I do not feel thankful. I am raging against the world today. Nothing seems fair.
A million things, upsetting, frustrating, annoying.
A million tiny things.
And one big thing. 
The fading light fell through the trees, dappling the carpet of crisp leaves beneath my feet today as I pushed Elin, alone, around the park. It was beautiful and calming. I needed air. Elin seemed to understand and sat perfectly in her chair as she gazed along with me at the world passing us by. We had a cuddle on a bench and I whispered all my secrets to her and told her life wasn't fair and what happened to her was not fair and I was sorry, and we and took in the stunning scenery together. I was glad and I was grateful she was there with me, and well. I thought of the awful news this morning and of a family grieving. I tried to swallow my almost inexplicable rage and give thanks after all. To the trees, to the air, to the world. To Elin, for her survival, without which my life would have been an endless cycle of damp and angry Autumnal days forevermore. And I almost managed it. Almost.
Autumn days when the grass is jewelled and the silk inside a chestnut shell,
Jet planes meeting in the air to be re-fuelled and the things I love so well..
So I mustn't forget.
No, I mustn't forget.
To say a great big thank you..
I mustn't forget.

Tuesday, 11 October 2016

A Year Out

Today, the 11th October, is a special day in the Drake household. Today marks one whole glorious year since Elin was last admitted to hospital. That is the first year of her life that has been completely hospital-free. 365 amazing days. In your face Cerebral Palsy! Also, in your face Alder Hey Neurologist (who insisted to us after her newborn brain scan that she would yo-yo in and out of hospital so regularly throughout her life that we wouldn't know which way was up). IN. YOUR. FACE.
Being admitted to hospital isn't always a big deal. Not when you're used to it. You know the routine. You know the doctors. You love the Nurses (plus Nurses breakfast toast is the best). You've been in every cube, you could re-paint the colourful wall decorations yourself from memory alone. It's so familiar. As long as Elin isn't too poorly, it's not like it's the worst thing in the world and we are forever grateful that we have the facility at all (cheers Aneurin). BUT at the same time, let's be honest, it kind of sucks. It's lonely, draining, worrying and worst of all it's really not nice for Elin. So, we have always been really pleased when we've had a long spell without making the dreaded phone call to the ward admissions. Not only is this good for family life of course but much more importantly it demonstrates just how BRILLIANTLY Elin's been doing lately.
We are so proud.
She is such a fighter. She's strong and robust and resilient and all the things those doomsday doctors prophesied she would not be. And what a demonstration of how a scan can show you a picture of a brain, but it cannot photograph the spirit.

Long may it continue.
Well done Elin :-)

On our way home last year for the last time in 52 weeks and counting

Thursday, 22 September 2016

A ghost of a dress..

Today I said goodbye to my wedding dress.
I didn't, as I perhaps liked to imagine on the day that I wore it, give it to my daughter. I haven't kept it for her to play dress-up with, or try on, or laugh at, or use the material for christening gowns of her own years away from now. Because I can't. My wedding dress hangs like a ghost in my wardrobe haunting me with the conversations I would never have with Elin about it and with images of her dancing around in it, laughing, that I would never see.
I'm not trying to be dramatic. I realise if things had been different, I might have had a son -rendering my dress uninteresting and useless anyway.  If things had been different it might have been something me and my daughter never got round to thinking about anyway. After all, I don't think I ever tried my Mum's wedding dress on, despite pouring over the photo's when I was younger. I'll never know what I would have done with it, if things had been different. If Elin had been different. But what I do know is what I will definitely never be able to do with it, which is share it with my daughter, on whatever level. So there it has hung, for the past 11 years silently mocking my idle daydreams from the corner of my cupboard. I've never even put it back on myself, not since Elin was born anyway. I harboured an in-built fear that it might hang there forever until I was old and demented and would be tempted to dress in it once more, gliding around a cobwebbed home like Miss Havisham in her dotage. Eek.
So, what do you do with a wedding dress you don't think you want anymore?
Well, in my case you send it to an absolutely amazing charity, which is what I've done this week. Months ago I heard of a very special charity. The more I read up on their work, the more it touched my heart. I emailed them so long ago I'd almost forgotten about it and recently received an email back, saying they could finally accept my dress (this length of response time is a good thing, it happily means they have lots of donations) The charity I sent my wedding dress to is called Cherished Gowns UK.
They take wedding dresses and using a family of volunteer dressmakers from across the UK they turn the dresses into miniature gowns for stillborn or premature babies to be buried in.
The testimonials are amazing.
But how I wish nobody ever needed one of these little gowns.
I know I have never experienced this. I cannot really imagine the pain- I'm not pretending I can. But someone close to me has and so I do feel I have some of an insight, however fleeting. I will also remember the moment the midwives delivered Elin and the cry that never came for the rest of my life. It's etched on my heart. A life changing silence. But, how lucky we were. The silence was not finite. It so easily could have been and it is for so many Mummy's (far too many, still, in this day and age). And I imagine those Mummy's, and their dreams and their hopes and how they can drain away, along with the colour from you face and the blood from your heart and the map of your future, just as quickly as a blue line can pop up on a pregnancy test. And I think, if I was them I wouldn't want to think of anything. I definitely wouldn't want to try and find something appropriate for my sleeping baby to wear. But I would have to.. and I wouldn't want dolls clothes, or clothes I might spot another baby wearing at the supermarket. I would want something special. Perhaps it would bring me some small comfort that someone far away had donated their most treasured dress for this purpose. Perhaps the fact that they understood and cared, even from an almighty distance would help me feel I wasn't alone in my torture. I think that would mean a lot.
So, I donated my dress and packed it up yesterday and I wasn't even sad. I have no right to be sad about losing a dress when so many have lost so much more, so much that we were so close to losing, too.
It's just a dress. It's what it represents that's important and you can't give a promise away to charity. A promise lives in your heart, not your wardrobe.
Sharing it with Elin is not, in the great scheme of things, important. All that is important is that she is here with us, sharing every moment. That's worth a thousand material possessions and more. Until next time, lovely readers.


Thursday, 8 September 2016

I'm gonna live forever...

Today Paul took Caitlin to London. She is starting her three-year course at the drama school 'Italia Conti' in North Clapham. It is one of the oldest drama schools in the UK, we are still absolutely buzzing that she got in her first year of trying. Statistically, only one 1 in 5 of students who get into an accredited drama school in the UK are under 21 years of age (Caitlin is 18) . And only 20% of students auditioning get in at all. You do the maths (I can't). Basically, she's beaten some serious odds and everyone is very proud :-) :-) Having been to drama school myself (yes! That's right! I had talent once upon a time, apparently, and was lucky enough to score a place at Queen Margaret's drama school in Edinburgh) I know that she is going to have the best experience EVER. I also know she is going to be homesick, and scared, and intimidated at times. But she's got this. It's what she's always wanted, she's strong, she's massively talented (more so that I could ever have dreamed of being). She'll be ok. She has heaps of family down there. It's going to be amazing for her.
She's not coming home until Christmas.
Oh god.
We're going to miss her so much it's worrying.
I'm worried for Elin and how much she will miss her.
Yesterday when Caitlin came to say her final goodbye Elin had no clue. She had no clue her best friend in the world is leaving. Until Christmas. She won't see her for 12 weeks. It's enough to make me cry (disclaimer: I did cry, I have cried and I'm still crying). I absolutely hate that we can't explain to Elin what is happening. We can't help her to understand in any way what is going on, where Caitlin is going, why she is leaving, that she is even leaving at all, how long it will be before she sees her again and, put simply, why she can't hear her favourite person in the world around her anymore. She hasn't noticed today of course. she won't notice tomorrow. It may be a few days. But soon she will start looking around. If she hears her name she will strain and struggle. If she hears Adele on the radio she will start laughing (she will think it is Caitlin).
It's not fair.
It's another thing we just gotta suck up and deal with. In a different world Elin would be excited for Caitlin, speaking to her on the phone, even texting her maybe, pouring over her freshers photo's, asking what she's doing, visiting her. That's the other world of course, the parallel universe where Elin was born ok. I don't know how to make this ok for her. I make it ok for me by drinking red wine, but that's not going to work for Elin. We just have to wait and see and THANK GOD for face time and Skype so she can 'see' and 'speak to' Caitlin as regularly as she can. That's the only thing we can do. You know I hate change, blog readers, and this is a pretty big one. It highlights, as things do now and then, the life we are leading in comparison to the life we could have led. The thought of Elin missing Caitlin and not being able to articulate it , express it and act o it make me feel physically ill, so we have to be her thoughts and her voice. We have to make sure we keep the contact. Again, thank GOD for the internet which makes this entirely possible. And hey, whilst I'm worrying about Elin and how she will adjust I don't have to worry about me and how I will adjust.
Because I'm going to miss her.(I won't even start on Paul, he is beside himself at the thought of her leaving!!)  I'm SO excited for the life ahead of her and her talent and what she may achieve. I know that path, I've walked it. She is going to have the time of her life.
But I will miss her SO MUCH. And so will Elin. Hey that's life though eh. Christmas will be here before we know it, right????

Baby remember my name :-) 

Thursday, 1 September 2016

The Chronicles of Elin (Part Four)

Pinch and a punch, first of the month!! Rabbits, rabbits, rabbits...etc etc!! That's it!! School's went back today. Summer is officially over. It might be my imagination but there is a distinctly 'Autumnal' feel in the air today! I LOVE Autumn and never mourn the end of Summer, but if I was going grieve the end of the season then this would definitely be the year to do it.
Summer 2016, you've been AMAZING.
Elin has been amazing.
She has been so well and so regularly happy in her chair that we have had a wonderfully relaxing and fun six weeks. Hardly any dystonia has meant plenty of trips out. No visits to the doctors, or the hospital, or even any worries that she is a bit off colour. Thank you, universe, for fulfilling one of our little wishes. We really don't take it for granted. We couldn't be happier as our holiday ends, there's lots of changes coming up (more on that later) but we're ready for whatever you've got. Bring it on.
So here are my final photo's from the end of the holidays. Elin can't wait to get back to school and see her teacher and key worker as she has really missed them. Routine is good for her. But how nice it's been not to have one for a while. Really, really nice :-)
Thanks for taking an interest in the holidays of our girl xx

Visits from buddy Mollie (and her sister Rosie who didn't want her picture taken haha)
Yep- guess who we saw AGAIN last week? Gruff!! That cheeky monkey gets everywhere. Had him all to ourselves for the night whilst his Mummy and Daddy had a much deserved break. Elin, of course, loved it.

Hanging around in the garden :-) 

Ty Mawr and their fabulous inclusive park. We messaged inclusive play with this photo to say thank you and they used it on their website! How lovely. 
It's quite nice where we live really, isn't it :-) :-) 

We have made great use of our National Trust membership this holiday. Erddig, about six minutes drive from us is simply beautiful and we had a lovely time sitting in the gardens on such a sunny bank holiday Monday

Sunny selfie :-) 

Shhhh!! Don't tell anyone again but Elin had another date!! Things are getting serious. Not the zoo this time, or her birthday party, but just a nice relaxed third date in the garden. I am absolutely convinced that Elin knew it was Llew from his breathing as she started beaming as soon as she lay next to him! Adorable!!

Enjoying games with Daddy. Elin is definitely a fan of the beard. I think I am too, when controlled. Let it get to wild and it starts to look a bit 'Miracle on 34th Street'  :-) I love Christmas but it doesn't mean I want to be married to Santa. 

Speaking of hair, Elin has had a new haircut ready for school. The girls in Imagine Hair Design in Ruabon are so good with her but it helps that she absolutely loves getting her hair cut! I think its the water spray and the sound of the scissors. I think this photo is just beautiful.
This was taken on the last day of the holidays (well-for Paul anyway!!) An absolutely stunning day at one of our favourite places, Chirk Castle. Elin loved it as much as we did. We are feeling very lucky as the holidays draw to a close, hope you are too lovely reader. Until next time...

Sunday, 21 August 2016

The Chronicles of Elin (Part Three)

Elin is continuing to have an amazing Summer holiday and has even seen the sun a little! A bit more of a low-key week really but still pretty busy and lots of fun. Keep it to yourself, but Elin has been on a DATE!!!!
Yes, she had a hot date at the Zoo with her boyfriend from school, Llew!!!  Since Llew had his cousin staying with him and we had Elin's nephew young Arthur staying with us, we thought a group day out might be just the ticket. Llew's Mummy and Daddy also take advantage of having yearly zoo membership so I'm sure there will be plenty of dates in the future! We had a wonderful day despite pretty torrential rain. Elin was BRILLIANT in her chair and we were so proud of her. Our fingers were wrinkly when we got home, like when you've been in the bath! 
 Elin loved the smell of the Monkey's this time!! 
Good looking on the boat ride!! Well done, Elin!

So even though we got soaked at the zoo, there have been some sunny days for Elin too! She has been chilling in the garden, visiting Ty Mawr Country Park and having a go on the park in the village which has disabled access :-) 
Elin loves being out in our beautiful garden (thanks Daddy Drake!) and I love it when she loves it because I get to read a book in the sunshine :-) 
You might have noticed a distinct lack of Caitlin lately! That's because she has had more holidays than Judith Chalmers this Summer! Elin has missed her loads and this was the day they were reunited after two weeks. Absolutely gorgeous!!! 

As well as all of this fun, Elin has been given an amazing new SEN toy by someone who didn't want it anymore. It's a special soundboard and plays various different sounds (hundreds in fact) when you press the buttons. We are still getting to grips with it, it can also record voice messages to play via the buttons, but so far Elin loves it! I'm glad someone was kind enough to give it to us because at almost £800 we never would have been able to afford it (I won't start!!) 

Elin has also been demonstrating some excellent standing this holiday. Well done, Elin!!! Hope all you lovely blog readers are having as good a holiday as Elin is. We've just ordered a new bag for school- is it that time already??? 

Friday, 12 August 2016

The Chronicles of Elin (Part Two)

Elin's been continuing her good spell and having more exciting times since my last post. We have just returned from our holiday in Yorkshire visiting family. It was perfect!
Well ok, not quite.....
Typical British holiday weather! But, if you're going to explore t'dales you might as well go for the full experience I say. You haven't really had an authentic time if you haven't used the words 'fresh' or 'bracing' to describe your excursions. 
I will happily take the inclement weather because Elin surpassed herself once again and was amazing. Even in her chair!! Not perfect but so much better than we could have wished for...

Boarding the Drake-mobile! 
On the way we had a pit-stop at Chanock services. Paul and I cried in the service station and not just because of the price of a cup of coffee. Apologies if you were there last Tuesday and you saw two adults burst into tears at their table in Starbucks. But something lovely happened which you don't frankly expect when you stop for a wee and an overpriced hot drink. We got chatting briefly to a couple on their way home to Scotland. The tables were so squashed together that the woman was practically sitting on my knee anyway, but being used to people turning their heads away when they rest their eyes on us with Elin I was pleased that she engaged in conversation and asked Elin's name etc. She also spoke directly to Elin which doesn't sound like a lot but actually is quite rare. The man told Paul that they had been to a classic car show, so we talked about that for a bit (you know, because my knowledge of classic cars is extensive ha) and then they talked a bit about their grandchildren when we said we were visiting Gruffy chops. As they got up to leave, the man passed me a £5 note, nodding in Elin's direction and said "Here, just some wee pennies for her holidays". We held our composure enough to thank them and as soon as they had gone we just looked at each other and burst into tears!!!!! People can be SO AMAZING. Elin was pretty chuffed with her pocket money too :-)

Those who know Elin well may not believe this was taken in the back of a moving vehicle, but it was and this is how she behaved in the car for most of the holiday! She was occasionally dystonic of course but did manage to calm herself down each time which is a new pattern of behaviour we have been pleased to notice.
So, lovely journey on the way augured well for a good holiday and hat's exactly what we had! You remember fluffy egg-head baby Gruff ? Well now he's two years old, a big boy and obsessed with trains, tractors, engines, diggers and vans. he couldn't wait to show Elin his 'Chuggington' toy...
Elin absolutely LOVED being around Gruff. Her eyes followed him around the room. She was delighted anytime he came near her to play but also loved listening to his constant chatter and buzzing round the place. Gruff is still at that magical age where he is just happy to play with Elin (and regularly tried to share his food, breaking biscuits etc in half and saying 'for Elin'- heart melting!) and doesn't really worry too much about why she's not doing an awful lot. He brought her a pine cone on a walk and when she didn't take it it just fell to the floor so her just picked it back up and tucked it in between her knee's instead. I have blogged before that there is a certain age, around three, where children start to become very wary of Elin, it's like they become a little bit inhibited- maybe even a little scared or worried of the unknown, they know something's not quite right but they can't put their finger on it. Then, usually by about five they don't tend to include her or play with her at all- it's just too much to take in and understand for them- why she can't hold the toy they brought her, whys he can't chase after them, why she doesn't answer back. It makes me thank our lucky stars for schools like Elin's who work everyday to try and break down those inhibitions between the able bodied children and the kids like Elin, teaching them not to be worried and showing how they can engage in a  different way with her to what they are used to.  Oh Gruffy, I wish you could stay two years old forever!!!
We did actually have a little bit of sun at first and used the time to go and see Skipton castle and get some famous Skipton fish and chips. As castles go I'd give it a 5/10. Pretty, but no wheelchair access (it's like they weren't even considering the disabled back in the Medieval times when it was built! TUT!!!) Also, when you've got Chirk castle on your doorstep and Caernarfon castle not too far away you become a bit of a castle-snob ('There aren't even any interactive re-enactments happening or giant dragon heads anywhere' etc) But still it was great to see and Gruff liked the cannons. (bang!)
Proof that the yellow orb in the sky does sometimes float above Yorkshire! 

 Of course the sunshine was short-lived and since no visit to Yorkshire is complete without a walk oop in t'dales, off we trotted in the rain. we went to a stunning place called Malham, which Gruff's Daddy Gareth had chosen from a 'Miles Without Styles' booklet for buggy/wheelchair users. It was a little rocky and bumpy but we made it to the waterfall, which Elin loved listening to. Considering bumps are usually something she doesn't enjoy a lot of in her chair, she did brilliantly. We did have to abandon the chair for the final leg though :-) 
She LOVED the gale-force winds!!!
On our way back down we met another Mummy, who has an 11 year old boy with C.P in a very cool all-terrain lightweight buggy. 'I thought I was the only one mad enough to do this' she joked. Nope. When in Rome!!
So concludes this instalment of the Chronicles of Elin. It is my birthday and I've had the best birthday present watching Elin enjoy her holiday.  Gruffy's Mummy and Daddy made us a lovely pre-birthday dinner with champagne and an actual proper coal fire the night before we left, which concluded a lovely, relaxing holiday. Perfect.
Maybe being 35 isn't so bad after all.
Until next time folks........