Please don't pity me...

One from the archives this week for you lovely lot at Posts From The Heart..
 So Elin is doing great! Really good. She is (klaxon! famous last words coming up..) enjoying a brilliant run of good health. Maybe that's why I haven't updated much. My blog is always more of a place for fear and frustration by its nature, though I don't mean for it to be. I guess that just what spurs me to write more than when things are going well. Anyway, I finally have something to say.
This weekend I experienced pity from a well meaning stranger. As you probably know by now, pity is not something I am ready or willing to accept. Empathy, yes. Sympathy, maybe. Pity? No thanks. This person was, in the nicest way, saying how hard it must be for us, having Elin. My protestations fell on deaf ears I think, probably dismissed as bravery. Im not brave. It's just I've looked pure hell in the face and we are now so removed from that it's difficult to concede that life is really that bad at all chiefly because..it isn't.....anymore. I wanted to say 'Ha! You think this is hard? You should have been here a few years ago!!!'
 This realisation got me thinking and reading back through some old blog posts from years ago. It strikes me how much more even things are for us now Elin is older. I had actually forgotten what a complete roller coaster those formative years were- though at the time I know I never thought I would forget. We were in such a weaker position than we are now. In and out of hospital so much more. Struggling to understand, comprehend her condition. Researching, appointments in Liverpool AH, continually messing about with medication, dealing with the late epilepsy diagnosis and further the dystonia diagnosis. Bleary-eyed mornings, eventually going back to work with a head full of guilt and worry, whilst all the time grieving. For a child that was never born and for what was robbed from Elin- which becomes a hidden, unspoken grief. It was exhausting. Im sitting here trying to think about when it changed. When things became easier and we got off the roller coaster. I'm not sure. We certainly still visit the fairground from time to time believe me. But the ride is smoother, familiar, less terrifying. There are long periods of wellness for Elin and short bursts of illness- an inversion of the first few years of her life. I go days, often weeks without crying now. Things that used to sting so badly leave me with a flat acceptance instead. Everything is just easier I guess. I can hardly believe the journey we have been on. I can hardly believe it took seven years before we would feel that we weren't hanging upside down from the tracks anymore. But, I'm glad we are the right way up again. Though, I cannot ever hope to completely let go of the pain and shock caused by what happened to Elin , I can hope that year by year it gets a little easier as it seems to have done, which I never would have believed. Today, to continue the theme park analogy, Banksy's fascinating 'Dismaland' is being demolished. It's gothic, nightmarish dreaminess (based of course on a twisted version of Disneyland) is where it felt like we were when Elin was born. We bought a ticket for Disneyland.... but we ended up in an art exhibition that nobody we knew had ever visited, where everything looked vaguely familiar and should have been wonderful, but we couldn't quite recognise anything and it was horrific and distorted and gut wrenching instead.
We are not there anymore.
We're not in Disneyland either.
We're somewhere in between and we're happy.
And you know what, well meaning stranger?
That's more than good enough for me.

http://www.bbc.co.uk/news/uk-england-bristol-34364808

Storytime...

Thanks to all those who gave Elin money for her 7th birthday which we used to buy a special MP3 player/Storyphone. This is her doing her best to sing to her favourite song on it, "Funky Monkey" . She also loves listening to Osbourne stories and on a very good day can operate a switch we attach to it to 'choose' what she wants to listen to, or to 'pause' it and 're-start' it. She absolutely loves it and it never fails to maker her smile! Her face visibly changes as soon as it comes on and it is very clear she is listening intently. Cant wait to download some more stories and songs for her ;-)

Junior...

Well, after feeling like my right arm was missing on Wednesday and being unable to shake the sick feeling in the pitt of my stomach for most of the day (it's such a wrench after having her with me day in, day out for so many weeks!) Im elated to say Elin's had an amazing first week back at school. We can hardly believe she is Junior-age now (Year 3!). Thankfully she doesn't have to move classes or anything as her class at school is a mixed-age class, but I was still a little worried about the impact of the daily school routine after nearly six weeks off (which must be a lifetime for Elin). I needn't have been concerned- it seems she has settled back in straight away and  her teacher is very proud of her, as are we. I think this demonstrates a maturity in Elin's levels of understanding and more proof that as she grows older, she is able to increasingly make sense of the world around her. It's strange to think that she is in Year 3, since that is the year group I teach in my school. I can't marry the two in my head- the chasm between the children I spend time with at work and Elin is, of course, almost immeasurable. As they pour into my class with their pencil cases and chatter, their brains already wondrously full and inquisitive even at seven years old ("I watch them grow...They'll learn much more, than I'll ever know...") I can hardly believe that my own baby is seven years old herself. I let myself wonder what she would be like if she was in my class right now- the cheeky one no doubt! Of course I will never know. I'm not saying I'm sad about it, it's just an observation really. When I taught Nursery and Elin started Nursery I found it incredibly hard, noticing the differences between her and my four year olds in class. I think there may be a blog post about it somewhere if you go back far enough. But this time it's a easier somehow, maybe time does help to heal a little. I do know what helps is the fact that she has had a wonderful time returning to school as a big Year 3 girl and of course the school itself and staff being so brilliant and expert in dealing with her needs. It's kind of impossible to feel sad, when you have that, because Elin isn't sad. School is her favourite place in the world and if I told my class next week that Elin's timetable consisted of swimming, fun, cuddles, music, stories, sensory based learning, messy play and generally being treated like Royalty they might wonder themselves why going to mainstream school is something to be envious of! In Elin's little life it definitely isn't. She wouldn't change her Year 3 experience for the world and so, neither would I. Time to stop thinking 'What if....?' and continuing to appreciate what we actually have. "You must let go of the life you had planned in order to live the life that is waiting for you". Welcome to the Juniors, Elin. You're going to love it.

First day of Nursery/First day in Juniors :-)

Talk To My Daughter.....

Talk to my daughter
Look beyond and try to see
The child that is inside her
Not her disability.

Talk to my daughter
She's a person just like you
Sitting here beside us
She wants to be included, too.

Talk to my daughter
Please try not to feel so scared
Though she can't reply to you
She will feel, and know, you cared.

Tak to my daughter
How would it feel do you think?
To hear voices all around you
But not make that special link.

Talk to my daughter
She's a child, she likes to smile
Hold her hand or make her laugh
Just speak to her a while.

Talk to my daughter
It would mean a lot to me
That you made a little effort
She is my whole world you see.

So please talk to my daughter
You might be quite surprised
To feel such a connection
And see her through my eyes.

It's about time...

Ein's having a good if a little boring week after the excitement of last week! Rain has stopped play on numerous occasions and we have been a little trapped indoors! Never mind. One good thing that's happened is that Elin has FINALLY had casts made for a new pair of splints. Wrexham has lost two Orthotists we have been told, in the past couple of months and have been unable to replace them as yet. This means that an already over-stretched service has become almost impossible to gain an appointment with. I was told to call back every day for the entirety of the Summer holidays in order to get Elin in, and finally we had some success last week. Obviously this can't be helped but it's incredibly annoying. Elin's current splints are no longer really fit for purpose, marking her and not fitting properly. They are important for when she stands up in her frame and also for when she's sitting in her chair- not least because they protect her legs a little when she is having an attack of dystonia on transport! Elin has very awkward legs and feet with pretty pronounced turns so getting splints that are right can be difficult. The last orthotist was brilliant, but sadly she has left. I hope the new splints are ok because it's a long process just getting them in, it can take a few weeks for them to come back once the plaster casts have been sent off.  I did my best to beg a new pair of boots for school too so am hoping she gets the nice patent black ones we requested! Will leave you with some pics of a very good Elin somewhat enjoying having cling film and plaster wrapped around her legs!

xxxxxx

Brighton Rocks

Remember my Disneyland posts? You should do, there were four of them and they went on for...ev....errrrr hahaha. Well I think I described a 'good Elin spell' like a harmonious Universe, when all of her planets align and create the best version of Elin there can be. In Brighton this week, Elin's plants aligned. Hurray!!! Definitely no coming home early from jollies for us this time- it was brilliant. Elin was a superstar and even managed to sit in her chair for the majority of the time- only becoming agitated after a full day and lots of sea breeze in her face which is fair enough! We are so proud of her. Not only did she love Brighton but she absolutely adored seeing baby Gruff! Once again she proved to us how much she loves having  kids around. It was delightful to see her responding to Gruff and he to her. Gruff has just turned one and is at that amazing age where he is interested in everything and Elin lapped up his energy. Pretty heart-melting stuff! He is clearly a genius (we're not biased) as he very quickly learned that Elin loves a good nose beep, after seeing us do it he thought it would give it a go himself. Naturally, she was chuffed as a butty by this. I draw your attention to exhibit A:

Yes, we are aware how cute this is!

Gruff aside, Elin also enjoyed a stroll (wheel) along the pier, her first trip to 'Wagamama's' , a spot of shopping, a ride on a carousel and plenty of family cuddles. What a cracking holiday she had. Our only regret was not going for a longer period of time- it's quite a trip down for three nights (one being a stop-over in London with family to break up the journey)! However since we're likely to make it an annual Summer Drakation, we'll know for next time. Thank you Universe for hearing our wishes and granting us a little oasis of happiness this week. It's just what we needed. Until next time, folks...

Oh dear! How sad!

xxxxxxxxx

Take me to the beach.....

Sorry for the hiatus blog readers- nothing sinister, we've just been having too much fun to stop and post!!! Elin's doing brilliantly after her week of doom! She must have realised it was my birthday week last week and has been good as gold. I had a super birthday- especially as Elin's Aunty Sammy came all the way down from Edinburgh for her annual Elin snuggles! She could hardly believe how much Elin had grown since last year. I forget what a big girl she's getting! Speaking of my birthday you may remember I'm a twin- I have always said Elin looks more like my sister than me (annoying! ha) and my Mum has always insisted Elin is the image of my sister at the same age. So, I rooted around for evidence and found a photo of Karen and Elin, both aged 7:

Wow. Maybe Elin is more Erlandson than Drake after all??? Or just a great mixture of everybody ;-)

I'll leave you with some photo's of Elin enjoying her Summer holiday whilst I head off to pack- that's right! Second attempt at a break and hoping little miss behaves this time! We are very excited to be off to Brighton to play with baby Gruff's fluffy egg head. Yay! Wish us luck, hopefully we shall return with tidings of great holiday joy and some good beach snaps!! Have a good week folks....

Elin and Aunty Sam

Elin and her buddy Poppy

Enjoying one of her birthday presents.....

xxxx