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Thursday, 19 January 2017

Post envy

I stumbled across another Mummy's blog today. One of her posts has been fairly widely shared on social media and it's not difficult to see why. I just had to share it on my blog. I desperately wish I had written it and even for a moment considered stealing the premise and re-hashing it in my own words. However, I could never have written such an eloquent and articulate post on this emotionally complex subject and I think you should read the original in it's full simple, honest, concise glory. Not only is it a very moving and engaging article but it's astonishingly accurate. At least in my view.
If I had a pound for each time I have thought this..
"Please don't praise me for loving my child with a disability"


Saturday, 7 January 2017

Don't look back in anger...

I love old photographs. I realise this is hardly revolutionary, most people love old photographs. Nothing can quite give you the warm, fuzzy feeling that an old photograph can. It can remind you of a great time you once had, or of someone you loved that is no longer here. It can present you with moments you don't remember as a child, or moments you do. Places you lived in, people you knew. It's hardly surprising that when faced with a question of what objects they would run to save if their house was on fire, most people say photo albums. Photographs record the big moments forever..birthdays, christmas, holidays. We want to treasure them and keep them to took at when we are old. They also record the small moments. The forgotten and seemingly mundane. But not always the insignificant....
Yesterday I saw an old photograph that did not give me a warm fuzzy feeling, it made me sad. I should point out I do not remember being sad when it was taken, aside from the general sadness that coated absolutely everything at that time of our lives in a permanent thin film of disbelief and horror. I was enjoying time with friends and family, I remember it clearly. I know Elin had not slept again the night before, but that she was beginning to improve following her giant operation at Alder Hey. So when the photograph was taken things were, by enlarge, probably looking up for us at the time. I think I was  feeling more hopeful and positive than I had been in a while.

But when I look at the photograph I still see sadness and desperation in my eyes. It surprises me that I look really young. I suppose I was young, I was 25 when I had her. I didn't feel young at the time. I'm pretty skinny (by my standards at least) from what must be the effects of constant worry (every cloud!!!) Worse, I see Elin. She looks sad too. She was- she cried a lot that day, I remember. She cried a lot every day at that age. She looks so stiff from the yet undiagnosed dystonia and the uncontrolled seizures we were still grappling with. I was so proud of her and I look back and she just looks so poorly and upset. I have to face up to the fact that she was. The first six months of her life were pretty miserable. For all of us. Many of my friends have had babies since I had Elin. I watch the purely magical world they arrive in following the birth and that magic is as foreign to me as it is to a childless person. We lived in permanent shock. It was like living in a horror story, where you just have to get up each day and keep living life as if everything is ok. The photo unwittingly takes me back to that time. I cry when I see it, for everything we went through and everything we lost and were grieving for. Mostly I cry for Elin. Where was our magic??
But then, looking back is ultimately empowering. How can you ever know how far you have come, if you never look back? Boy, have we come a long way with our amazing girl. This time is alien to us now. Sometimes I cry for what is past, sometimes  I cry for the future, but never for our present. The baby in the picture, stiff, unhappy, confused by the world, regularly in pain and simply unable to smile (it was ten months agonising months before she did) is in that foreign land of times gone by. How different she is now.  So I will always steal myself and be brave and stare these photo's in the face. They can't hurt me. She is the happiest girl in the world. She smiles and laughs constantly and brings so much joy to the lives of everyone who knows her.
It's a miracle and so is she.

It turns out our magical moments just arrived a little late :-) 
never stop believing, folks. Happy weekend xxxx

Saturday, 31 December 2016

Ring out the old......

...Ring in the new!!
So globally, 2016 was not the best of years, heartbreaking stories seem to have invaded the news every week of the year and I am sure we're all hoping 2017 brings a brighter horizon for the world. Happily this was not mirrored in Elin's little life, since we can now say 2016 has officially been her best year yet! If you have been following my blog you will know all about that, so I won't repeat myself. Just to say we enter 2017 as cautiously as ever as far as Elin's health is concerned (we never count our chickens!!) but certainly with more confidence and energy than we have ever before and that is what we'll be toasting as the clock strikes twelve tonight :-)
In the meantime, here are a few Christmas pictures from Drake-mass which happened in two stages, first at home in Holly Cottage and then up in Yorkshire with the entire side of the Drake family. Both equally wonderful and happy. I hope you had a good a time as Elin this holiday, all the best for 2017 to you amazing, supportive and caring readers of my little blog.
Happy New Year (for tomorrow) folks!!

Christmas Eve in our 'Wear your stripes for Alder Hey' pyjamas. Will Santa come???

 He's been!!!!!!!

 Opening presents

Wrapping paper is so funny.
Daddy Drake did a cracking Christmas dinner. Well done!!!

I don't think it's really Christmas unless you're wearing velvet hot pants.......

 Yay! Elin's favourite.
Packing to go to Yorkshire. Can anyone spot an Elin???

We're going on a Drake hunt!!!! 

Elin was simply AMAZING in her chair all the way to Yorkshire in the car (best ever) and we even managed a two hour wonderful family winter walk with her. She didn't make a peep (except when laughing!)

Nobody does christmas like the Drakes.........

This is about half of us- way too busy to get a whole group shot this holiday how sad!!

The kids open their presents and Elin (off camera) is in her element with all the laughter and sounds of ripping paper!!!

What a lovely, lovely Christmas break.

So I would like to badly paraphrase a song as we enter 2017- there will always be another mountain  that you want to move- it might be an uphill battle, sometimes you'll lose. But it doesn't matter how fast you get there or what is waiting on the other side....
It's about the climb.

Happy New Year from the Drakes.
Bring it on 2017 we're ready

Saturday, 17 December 2016

A Merry Little Christmas....

Today's post, traditionally, is about Elin's Christingle service at school. Unfortunately the dreaded Norovirus has enforced a break with tradition this year, as the service was cancelled!! Quelle dommage!! I'm not overstating the situation when I say, as a result, Christmas simply won't be the same. It really is the start of the festive period for us and by far my favourite day of the school year- see previous December blog posts for the many reasons why! We were massively disappointed that it wouldn't be taking place, though of course it was unavoidable. 
Fortunately, the end of term ended up being pretty special anyway. Firstly, Caitlin was asked to be the soloist in the Birmingham Canoldir Male Choir 50th Anniversary Christmas concert on Thursday night at the stunning Birmingham Town Hall. 
She had an amazing time and performed six songs, luckily Daddy Drake was there to get a video for Elin, which she has been listening to a LOT already this holiday. The clip at the top of the post is one of my favourite's because it's originally Judy Garland's and it always has been in my top five Christmas songs. Caitlin does a beautiful job with it! 
Then there was the lovely surprise of Elin being in the local paper yesterday morning, as Father Christmas had visited school and they had included her photograph in the write up. I mean, if you haven't been in The Leader as a child, are you even really from Wrexham??? The photo was so gorgeous I phoned The Leader and it turned out they had taken a few more, which they sent to me so I could order them. I think you'll agree they were beautiful and we just couldn't resist buying them. Elin looks so happy, definitely pictures to treasure! It helped soften the blow of the cancelled Christingle (a little bit at any rate!)

Finally, as a pre Christmas treat, we had booked tickets to see 'The Lanterns' at Chester Zoo for after -school yesterday. We had never been before and weren't sure what to expect. WOW. We were SO impressed. It was absolutely stunning, there were lights and lanterns everywhere, actors dressed in lantern suits to interact with the children and of course the huge animal lanterns which can only be described as breathtaking. I would highly recommend it, especially if you have a child with special needs as one adult is able to enter as a carer for Elin, so Nanny came for free hooray!! Any child that responds well to light would love it- and Elin really, really, loved it. I wish I could include all my photo's but my computer looks like it's coming down with Norovirus, too! Heres a few I managed to upload

 The pecky bird was one of her favourites!

 Amazing Zebra dancer
 My favourite- The Giraffe's!!
 Hello Mr Penguin

 What a naughty Emu!
The people at the Zoo gave us a guiding lantern to help us find our way around :-) It was so amazing for Elin have an experience at Christmas that she can really take part in and enjoy.

So, all in all, a pretty good start to the Christmas holidays Drakeside! Praying we aren't hit by illness and that Elin continues to be well. Have Yourself A Merry Little Christmas, folks. Until next time..xx

Thursday, 8 December 2016

I'll be there for you..

Today was the first of Elin's Christmas concerts. She had quite an important job. She was a "Disco Star" in a play based on "Strictly Come Dancing". Very appropriate!!  She really enjoyed her moment in the spotlight this year, maybe more than any year before. She was just so happy up there, it was wonderful. What's more, she was in her standing frame which was quite a surprise- she's usually sitting on her key workers knee. It was great to see her upright alongside her little friends from mainstream, she was really part of the scene and goes to show how good her dystonia is at the moment :-) She looked so grown up! I felt extremely lucky to be watching her having so much fun amongst the Christmas songs and dancing. It's not something I ever take for granted. It was also, as ever, hugely moving to note the tangible support from every person in the room for these kids (the concert is a mainstream school concert but includes the children from the unit where Elin and her classmates are) and it felt truly special. Elin was fortunate enough to have a little help from a girl her age who attends the mainstream part of the school. This was probably my favourite thing about today. This little girl did not let go of Elin's hand whilst they performed on stage. She kept checking she was ok. When they weren't on stage, she stroked Elin's cheek and hands. When I thanked her at the end for looking after Elin so beautifully, she told me there was a party in her class that afternoon and that she was going to bring Elin a plate of food. She also asked staff from Elin's part of the school if she could still keep coming to see Elin even though the concert rehearsals were now over. If I wasn't too emotional before, I certainly felt a little lump forming in my throat then! (I managed not to cry during the performance for the first time ever, but Paul cried from the minute he spied Elin being pushed onto the stage!!) I've blogged about this before but the inclusion which Elin's school regularly promote is second to none. For Elin to have such rewarding interaction with mainstream children is so lovely for her (she spent the whole time looking adoringly at her new friend!) and also so important for the mainstream kids too. They are growing up unafraid of what is different to them, learning acceptance and understanding first hand without even knowing it. What a great education for them. I hope they never lose their openness and kindness. I hope they remember Elin and her friends as they grow up and move into their adult worlds and primary school is a distant memory. I hope they will always be ready, where others may not, to hold a hand, or stroke a cheek with understanding in their minds and love in their hearts.


Wednesday, 9 November 2016

My daughter knows no hate..

So today we woke up to the news that the USA has a new president, Donald J. Trump. When Elin woke me in the night I checked my phone and it seemed like he would win, though I couldn't believe it would actually happen. As I drifted back to sleep once she was settled I had a nightmare about the election, Trumps face looming large like some sort of evil inflated cheesy wotsit, he had won. When I woke up I discovered my nightmare had ACTUALLY come true. Like so many people today I have many questions about this could happen. How the USA broke new ground with it's first ever black president eight years ago, only to elect someone today who is endorsed by the KKK. How on the 27th anniversary of the Berlin wall coming down, America had managed to elect someone who's arguably most viral soundbite was, on addressing immigration, about building a wall around Mexico to keep the 'rapists' (Mexicans) out of his country. How the USA must now move from the grace, intellect, dignity and class of the Obama's to seeing the Trump's becoming their First Family. My heart is slightly broken for the free world and for all of us. It feels like a joke. I'm not Clintons biggest fan, but even her concession speech this afternoon was more presidential than anything Donald Trump could ever dream of uttering.  America is no longer the land of the free and the home of the brave, after the most vitriolic campaigning in its History. I cried through Hilary's speech about equality, because, hot on the heels of Brexit of course, I cannot understand why there are so many people out there who would vote for the attitude to the world that Trump has conveyed in the past surreal 18 months. Don't even get me started on the viral video of him mocking a disabled journalist. And yes, I was looking forward to a female president, albeit an imperfect one. A good friend is pregnant. I think of her baby coming into the world, if it's a girl, and how she would deserve to know that anything is possible for her.  In her speech, which finally drew my tears after an angry day, Hilary said " To all the little girls who are watching this, never doubt that you are valuable, powerful and deserving of every chance and opportunity int he world to pursue and achieve your own dreams". Trump's views on women expressed so sickeningly in 'those tapes' from a few years ago could not be more of a contrast. What do we tell our daughters???
I don't, of course, have to tell my daughter anything.
Elin knows nothing of world politics, she never will. Elin has no glass ceiling to try and smash in her lifetime. Today I am glad, that my daughter knows no hate.
She knows no racism, no sexism, no misogyny, no lies, no hurt, no anxiety. She knows no betrayals, no inequality, no sadness, no despair, no war. She knows no conflict, no poverty, no death, no destruction, no darkness.
She only knows love.
She knows cuddles, laughter, support, safety. She knows warmth, humanity, fun, smiles. She knows trust, contact, music and light. She will never have to negotiate the world in the same way as she would have done in her parallel lifetime, that lifetime which slipped away from her the day she was born.
She knows no hate and never will.
We have always said this was something we could hold onto, that her life, to her is a wonderful one. Maybe we were just trying to convince ourselves a little, to make things seem ok. But today, as we went to Elin's annual school review (which was so wonderful and positive) and got to see her in her classroom playing with a parachute and the amazing staff at her school, it didn't feel like I was trying to convince myself of anything. It felt real. It felt like she was operating on a higher level of consciousness than the rest of us mortals and that she was better off of it. I felt grateful, I felt glad.
My daughter is special, a miracle. She knows no hate.
And she never, ever will.
And I thank God, at least, for that.

Sunday, 6 November 2016

A brighter day

You may have gathered my mood was not a light one when I wrote my last post. It's not like me to dwell on the negative, but sometimes you can't help yourself. Sometimes the weight of this whole journey gets a little heavy. Then, if you have bad news- that may be even unrelated completely to Elin- it can tip your balance. The knife edge of emotion that you regularly find yourself walking along as a parent of a severely disabled child becomes impossible to negotiate effectively. So you fall off the edge a bit. Only a bit- you're used to this after all. But still, it's hard sometimes. I'm not trying to apologise for these times, it would be disingenuous and lets face it, slightly weird if I wrote a blog like this and pretended everything was all sunshine and lollipops. It's not. But today I can say thank you to the Universe again. Thank you that these times of darkness are so much fewer and further between than they once were. I can recognise this, how our lives have taken 8 years to feel normal, but that, thankfully, normal is exactly what we feel. For the majority of the time anyway. The shadows only seep through the cracks in the light that Elin brings to us occasionally now. And I am thankful for that, every day.
Elin herself has been wonderful, for so long. Like every other Mum of a severely disabled child I am almost afraid to say this. But we have to celebrate the good times without being frightened of any repercussions fate might decide to deal us! She really has been amazing. We are so happy and proud of her. School report continual improvements in how alert she is and in her abilities (such as using switches). Just wonderful. We got through the dreaded month of October with out any problems (first ever) even though a little cough reared its ugly head- it didn't develop. Thank you, thank you, thank you.
Oh- and Caitlin is having the best time ever at Drama School in London. Having visited her cute little bohemian flat that she shares with two fellow acting students a few weeks ago I can confirm she is 'living the dream'!! I wanted to stay and be a student again!! It's hard work (hours are 9am-6pm daily) but since when did anyone achieve a dream without hard work?? It's such a wonderful and exciting time for her. She loves it.
On Friday Caitlin came home for the first time since she left for London on September 8th. " I was SO glad to wake up this morning and see a field!!" :-) It's been two long months without her beloved big sister for Elin. We were anxious to see how she would respond. At first, Elin was a little confused. You can't blame her! Two months is an age for her. As she tried to get her bearings it was clear she was desperately trying to work out what was going on. Then she slowly seemed to understand that the prodigal sister had returned and was delighted. I'll let the photograph do the rest of the talking...
We do have so much to be thankful for. And we are.
Until next time folks...