Flying high

This is a pretty fantastic video of Elin taken at school, clearly showing her indicating that she wants 'more' of something. In this case, its more of the song 'Puff The Magic Dragon' please!!! Elin's support worker lets her listen for a while, then cuts out the music. She will only start it again once Elin 'shouts' for it (by vocalising as best she can). Not only can you see Elin 'singing' along to the song and visibly loving it, but (on the second time in particular) her facial expression changes INSTANTLY when the music is turned off. She waits, then clearly 'shouts' for it to be turned back on. Elin's support worker touches the side of her mouth to indicate to Elin that she is waiting for her to shout before she will turn the music back on.  I cannot express how it feels to see Elin communicating in this way, small as it may seem to those unaware of her journey. But she has travelled so very far under the expert guidance of her teacher and support worker at school. We are so  lucky that this multi sensory, individually tailored and specialist education is available to Elin. We will never cease to be grateful for what it has given her and what it has given us to see her grow, in a more tiny way than most ordinary experience would deem relevant but in a bigger way than we could ever have dreamed.

"Children with special needs are like a butterfly with a broken wing. They just need extra loving care to learn how to fly"

She definitely has the extra loving care.

Keep flying, Elin

xxxxxx

April showers

Well, the Easter holidays are almost over (sob!) and Elin has had an equally good second week I am pleased to report! We have enjoyed such a lot of quality time together as a family we feel extremely lucky to have the same holidays as she does. It gives us that precious time with her and the luxury of not having to plan too far ahead- it means we can just see how she is each day and take everything from there. Her sleeping pattern hasn't been amazing, usual story for the school holidays ( the change in pace to a much more lazy routine just doesn't tire her out as much) so we have been getting up late and going to bed late. It is going to come as a shock to all of our systems to be up and out of the house by 8am next week! But that's what the holidays are for, right?
Anyway aside from lots of napping Elin has enjoyed several visits from friends, a few nice strolls in the sunshine and a trip to the Cinema. She also unfortunately had a trip to the doctors. The sore on her ear simply hasn't healed- and it's been aaaaages. We did everything we could to avoid oral antibiotics which never agree with her and usually set off her stomach on a very poor cycle which it can be hard to right, but in the end it has been the only option.Predictably it has had connotations for her bowel movements (tmi!) but so far this seems to be the only side effect. Hopefully it will abate as soon as we stop the short course.
This exact time last year we were in Disneyland Paris. I can't believe it's been a year. I'm also not giving up on the hope that we will get back there one day. But we cheered ourselves up by going to see the latest Disney film 'Zootropolis' today and we all loved it! Such a clever film with a great message of equality at it's heart and funny, too. Elin loved it!! I love how much she loves the Cinema. Just a shame she has not been for sitting in her chair these past couple of days, but so the endless cycle continues, we have had a good few days so we can't expect more than that.
I hope your Easter holidays have been as enjoyable as ours. I am finishing off the week with a Hen Night in Blackpool tomorrow-eeeek! 22 of us footloose and child-free. It could get messy. I'll let you know, if I don't die of alcohol poisoning before then. Until next time........

Elin enjoying a stroll in the village with her "ghetto blaster" as my Mum calls it. Seems to help a bit with distraction when she's not in the mood for sitting.

The eagle-eyed among you will notice Elin's new red rain mac (yes I know some of you Elin fans definitely notice these things!). The thing is, Elin has been sporting a gorgeous yellow mac for some time now which I have been insanely jealous of. Anyway, Topshop finally answered my prayers and are now stocking an adult version of said yellow mac. Well, of course I had to buy it. But this left me with a clashing issue (as in, I clashed/matched Elin when we went out.  Not a good look. I am sure Victoria Beckham and Harper can pull off matching outer-wear but Elin and I just looked a bit daft ) So what was the solution? Well, Elin would just have to have new mac too of course !!! Ha!! Needless to say Daddy Drake is bemused by the whole thing and thinks it's ridiculous but he is, after all, just a man and doesn't understand such issues so we just ignored him. She can still wear the yellow one to school I pointed out reasonably, but it fell on deaf ears. I think you'll agree it was worth every penny .....

Hee hee! New Drake Spring wear line came in very handy with all the April showers this week! Something else Elin has been up to other than parading her new mac around is playing...lots of playing. Talking Tom is still a huge favourite. I took this snap which I entitle 'cheeky face'. Caught in the act of some serious fun Miss Drake!! 

Sneaky cinema selfie. I get in for free when we go, as Elin's carer, so it actually works out a very cheap day out for us. Especially when Paul insists on buying snacks from Poundland before we go in as he's 'not paying those prices' !! He calls it sensible, I call it tight. Anyway we highly recommend 'Zootropolis' good fun was had by all :-)

Until next time Elin fans.........

Oh I do like to be beside the seaside....

You know when you're in a nice hotel and you're not used to it...and you get to the pool and open a locker and there is free dressing gown, towels and flip flops and you're landed. Wow. This really IS posh you think. So off you trot and then later on there is a bit of a commotion- there are hotel employee's coming in and out of the pool etc- and it turns out you opened someone's locker, stole their stuff and caused the hotel to try and swap the family's room because the room key was in the pocket of the dressing gown you're now parading around in at the poolside, and said family are worried the 'burglar' might turn over their room and take the rest of their stuff? That.
Yes.
That happened, to me, during our hotel stay. Mortified doesn't quite cover it, especially as the mistake was finally cleared up when the child of the family was heard to announce 'Mummy isn't that lady wearing your dressing gown?...and flip-flops.......?' CRINGE. You can take the girl out of Wexham.......
Anyway, aside from a very red face and having to leap behind various pieces of hotel furniture every time we saw that family thereafter, we had an AMAZING time. Best of all? Elin loved it too! No coming home early this time :-) The wonderful hotel (The Quay Hotel and Spa in Deganwy) you might remember had given us a free night (in a suite!) in lieu of the night we lost last Summer when Elin was poorly. See previous blog post if you so wish:
http://cerebralpalsyjourney.blogspot.co.uk/2015/07/we-are-just-back-from-one-of-most.html
They also threw in a four course meal and gorgeous full Welsh breakfast. Wow-thanks! We thought it would be nice to use the free night on our 11th wedding anniversary, so that's what we did yesterday. Difficult to image a nicer way to celebrate really- there is no place more beautiful than Wales in the sunshine and we were VERY lucky to enjoy amazing weather the whole time we were there. It was fate.

Aroom with a view. This really was the view from our suite. Woah. 

Not only did the sun shine as if it was mid August but  Elin decided to have a good sitting couple of days too (she wasn't OVERLY happy, but no dystonia either which is probably the best we can hope for when out and about somewhere unfamiliar) Hurray!! Does it get any better? She also timed a nap in her chair for when we were eating breakfast and slept soundly in her chair during the full four courses of that evening meal too! Well done, Elin!! It must have been the sea air. 
It was great that our suite was on the ground floor and also very close to the spa. This made going to the pool pretty easy. Elin was great in the pool especially given that it was not the hydro-temperature to which she is accustomed and there were a lot of children making a lot of noise. Everyone was really kind and I had the offer of help in the women's changing room from another Mum, who had her severely autistic son with her and she said, understood. These moments are small but they make you feel like you're not alone. So many people out there are dealing with issues day to day, just going about their lives trying the best they can. 
On the way home we called at Llandudno to take advantage of the weather. It was stunning. Elin made a little friend named Esme on the pier when we stopped for a drink and I met another lovely Mum who did nothing special at all except talk to us and encourage her little girl to play with Elin. Sometimes the most special moments are also the most normal. That is one of the many things Elin has taught us, the ability to see the miraculous in the mundane. I am sure my friends and their children have these encounters all the time. Forgettable within five minutes. Us? Not so much. So it means a lot when people reach out. Thank you Esme and Mummy, you were the cherry on the cake of a wonderful little holiday.
Lots of the school holiday left to look forward to and in the meantime I will leave you with some pics of Elin enjoying herself. Until next time.........xxx

                                                               

Elin's Easter pressie-a new Finding Nemo swimsuit! Yay! Beautiful.

 Llandudno in the sun :-)

 To top it all, when we got home Elin rounded off her lovely holiday with a fringe cut. She was very happy with the results!!

xoxo

Pasg Hapus Pawb!!

Happy Easter everyone!
I have decided Easter is an awesome holiday. The same glorious length as Christmas (for those of us employed in schools, anyway) but without any of the stress or trying to pack in a million commitments. Added to this, if you're lucky, the sun will come out.  Today, we were lucky. The weather was beautiful. We shelved previous plans to take Elin to the cinema to see the new Disney film (save that for a rainy day!) and decided to go to the Zoo.
It was great! Elin did really, really well with her sitting and though she needed plenty of breaks we did get some good long walks out of her! The zoo is vast and even more so now that the new 'Islands' section has opened. We were very impressed - it was really lovely and could have been a day out in itself with the different countries represented in different areas and the giant 'tropical realm' dome. Best of all though, a boat ride. I do love a good boat ride. We were worried at first that Elin may not be able to go on as you had to be able to walk for health and safety reasons (don't start me off) However, it turned out the ride had several adapted boats for wheelchairs and not only this but we completely skipped the 45 minute queue before hopping onto our special boat!! Hurray! Well done, Chester Zoo!!! It really reminded us of Disneyland (a whole year ago!!! Sigh!!!) as we are simply not used to that kind of accessibility in this country. Sufficed to say Elin lorded it up in her elevated position at the back of the boat like the Queen of the Nile!!!  Chester Zoo also have a fully equipped disabled changing area with hoist and bed - no changing Elin not the floor- so it really is one of the best places to visit in the area if you need these facilities.
Mind you, before I praise the zoo too much I have to say the entrance fee is fairly astronomical and for an ordinary family of four or five you would be looking at over a hundred pounds for the day. Jeesh! Luckily for us they do provide disabled/carer rates and I know lots of my friends have yearly family passes which work out very reasonable if you want to go a few times a year. I would definitely consider getting one of these if we could be assured that Elin would sit in her chair from one day to the next, which we can't- we just have to keep our fingers crossed and see what kind of a week she's had! Well in any case, today it paid off. We have had a lovely day and hopefully the rest of the Easter holidays will follow suit. We are going to a hotel on Wednesday, the 'Quay Hotel' in Deganwy (remember how they promised us a free night after we had to come home early in the summer when Elin was poorly? Well, we're using it- on our eleventh wedding anniversary :-) Thanks very much, Quay Hotel! More on that later in the week) and I'm sure Elin's going to love it.
Hope all you lovely blog readers are enjoying the holidays as much as we are so far!! I haven't even opened any eggs yet!! So much to look forward to :-)
Will leave you with some photo's of Elin's grand day out. xxx

 Elin absolutely LOVED the squaking of the Flamingo's!! We stayed there for ages watching her laugh :-)

Thanks Chester Zoo!  

 Elin loved the gentle ride around the lazy river, feeling the boat wobble, listening to all the sounds and the other children in the boat.

Katherine Hepburn in 'Out of Africa'. Or is it Elin????? 

 Elin looking for Sophie's Mummy in the Giraffe enclosure.

Happy Easter folks xxxx

London calling..

Hi blog fans! Elin has had an ok couple of weeks, a little up and down with a cold and cough and the odd day off school! But happy to report she is lots better and  smiling away this morning.
She's not the only one.
I have an ulterior motive for writing this post today- we've had some great news and basically I want to brag about it. Yes, I realise bragging is not attractive and it's not really in my nature normally but the fact is, this deserves a massive, showy-off , proud, BRAG.
Caitin got into Drama school.
Not just any old Drama School, one of the most prestigious schools in the whole country. Italia Conti in London.
She will spend the next three years completing a B/A Hons in Acting in this fantastic college, in a city that is renowned worldwide for its theatre scene. WOW.
This was no mean feat. She had two auditions before being accepted, both were a full day long and incorporated movement and voice workshops as well as acting performance. Each time, they whittled down the thirty or so people attending the audition as the day wore on and both times Caitlin was only one of three left standing as the audition drew to a close. This gave us hope but made the wait for the all important email on a final decision no less stressful. You see, the college have been auditioning potential students since December and still haven't finished. The incredible statistics are that they will have almost 4,000 people auditioning each year. FOR 24 PLACES. Caitlin has one of these places. I think you'll agree her achievement is even more incredible when contextualised like this! It can't be underestimated how difficult it is to get into Drama School these days, with each school mooting similar statistics to those of this particular college in term's of auditionee's to places ratio. Also only 1 in 5 of  all accredited UK drama school places go to students who are under the age of 20. Double-WOW!!!
The email arrived yesterday at 4:30pm. It was Paul's birthday :-)
Perfect.
We're off out now to celebrate and to try and distract ourselves from thinking about how Elin will cope without her favourite person in the whole world being around :-( Thank heavens for face time and Skype.
Here's to the future! Follow you dreams, folks. You neve know what could happen.
"If happy little bluebirds fly
beyond the rainbow..
Why..oh why....can't I?"

Sunday love song....

Sunday lunch out today at the Croes Howel. Highly recommend!

Happy Mother's Day blog readers! Hope all the super Mum's out there have had a great day. I think it's fair to say it's universally acknowledged that Motherhood is one of the most difficult jobs in the whole wide world. The best job, yes. But also the hours are crazy, there is no pay and you can never clock off. Everyone around you is doing the same job which means you constantly compare yourself- are you doing a good ENOUGH job? Does everyone else think you are? Get something right in this job and there is no feeling like it. Get something wrong and the guilt will eat away at you for weeks. Did you make the right decision? Will you live to regret choices made for your children down the line? There's a lot of pressure. So there should be, it's the most important job you will ever do if you are someone who has chosen to become a Mum. it's the first thing you think about as you fall asleep and the same when you open your eyes. It's pretty huge.
Of course, all that is worth it and more. Otherwise nobody would ever be a Mum! But that's why Mother's Day is so nice. It's great for Mum's to be told that they are doing a good job. I do subscribe to the train of thought that you should tell your Mum you love her and appreciate her all the time and not just on one day of the year, but in reality and for some people more than others it doesn't always pan out that way. So Mother's Day is that opportunity for everyone to raise a collective glass and thanks the person that in most cases has shaped their lives above any other and made them the people they are today :-)
I am lucky. I have an amazing Mum and have blogged about how we feel about her before. I am also lucky because I have a husband who isn't afraid to show his feelings and frankly is probably even more emotional than me! As generous he is with his words, his gifts don't always follow suit. I'll be honest, he is one of the worst present - buyers ever. Last minute, not thought through (don't start me on my 30th birthday) and generally a bit pants. Luckily I'm not too bothered about presents (HAH!) or at least I've learned to appreciate the thought and effort however misguided (she said through gritted teeth). BUT he IS a man after all, however sensitive and lets not pretend this is anything exclusive to Paul. He more than makes up for it in what he does for myself and Elin every single day. So, imagine my surprise today on Mother's Day when alongside my usual (but beautiful) flowers, he presented me with an email he had sent to one of my favourite radio shows, Steve Wright's Sunday Love Songs (Yes, I know I'm getting old but I love it!). He wanted it to be read out in the dedications and had sent it three times in order to try and ensure it was seen amongst the surely thousands of requests Steve must receive ready for the Mother's Day programme. Sadly, he didn't read it out. But I don't care. It was by far enough that Paul had sent this for me, and a week before Mother's Day too! Planning ahead and everything! Impressive. And very, very lovely. I am very lucky.
So I joined the legion of Mum's today reminding themselves through lovely thoughtful gifts from their children and partners that they are doing a good job after all, because we're doing the best job we can. I am Elin's mummy and nobody can fill this role better than me. I created the post, I wrote the job description and I fulfil it every day. So any Mum's out there....leave the worry and the guilt behind for today and every day that you can.  You're doing a great job. It's ok to pat yourself of the back now and then. You are everything to your child and nothing can ever change it.
I'm not prefect, far from it. But I'm Elin's Mummy and that's good enough for her.
I'm learning to make it good enough for me, too.
Happy Mother's Day all xxxx

The e-mail

xxxxxxxxxxx

Why I lie to my Grandad...

Elin has started half term by visiting her Great Nanny and Grandad.  Elin and my cousins two gorgeous babies bring their Great Nanny and Grandad so much pleasure and joy, I'm so glad we are still able to visit them in their own home. They like nothing better than to talk about all three of their Great-Grandchildren and my Nan's favourite thing is to regularly take photo's of them all down to the Bingo to show her friends :-) I know how lucky I am to still have my grandparents in reasonable health, so may of my friends are not in my fortunate position in their mid thirties. Despite their clear adoration of Elin, it must be quite difficult, I think sometimes, for them to fully appreciate her condition and the impact of it- or maybe I should say the severity of it. My Nan and Grandad hail from a time when children with severe disabilities simply did not survive. Or, they were removed from their families and left in special homes or hospitals until inevitable tragedy- something that seems completely incomprehensible in our modern world, horrifying even. This means that as my Nan and Grandad were growing up and until well into their adulthood, they would have had little or no experience of severely disabled children and probably adults too.  Modern medicine must seem incredible to them . I suppose it was fight or flight in the 1950's - a doctor either made you better or you didn't survive. So this odd halfway house we inhabit where Elin can live and be (mostly) well, but not 'better' and with no prospect of being 'better' is a strange one for them indeed. As such, the prospect of Elin being 'better' is not something they are ever fully willing to relinquish. My Grandad finds this particularly difficult, probably because my Nan's nursing background affords her a slightly deeper understanding of the medical aspects of Elin's life at least.I'm not saying they don't love the bones of her as she is because of course they do and any intelligent person can see Elin's limitations and absence of ordinary milestones over the last seven years. But it's fascinating to me that they still think one day 'something' might turn up- a new medication, a new surgery, a new discovery. My Grandad asks me, in his wonderful naivety, why we cannot take her to America to get her 'fixed'. It breaks my heart. Not because I can't cope with the questions, but because I can't give him the answers he want so desperately to hear. That there is definitely hope, that 'you never know'.. Elin might one day walk, or talk. That stem cells research is 'doing so much these days'. So a while ago I stopped trying to explain and I went with it. Even though it goes against every fibre of my being to do so. Yes, maybe one day. Yes, who knows what stem cell research could achieve, yes, we will never say never. Because if I was 84 and I had lived through a World War, toiled down a mine working harder than any teenage boy these days could ever comprehend just to feed my family, witnessed many tragedies in my life time including great loss of loved ones and the world had become an alien place full of phones and wireless connections that I didn't understand and it was tricky to get about and life was daily feeling just a little bit harder.....what would I prefer? A lie that draws a smile or the truth that draws a tear?

I would want someone to lie to me every time.

So yes, Grandad. One day, in the future, when you are maybe no longer here, we will get our miracle on 34th street.  Elin's going to be made better and we will tell her how much you loved her and everything will be ok. I promise.

You never know.