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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 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'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...

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 :-)