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

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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.

A big step

Hello poor neglected blog!!! All is ok in the house of Elin right now, despite a bit of an 'iffy' couple of weeks. Elin's had some sort of weird bug or virus which hasn't affected her too badly but has left her quite dystonic and a bit off colour. She's missed a few days of school off and on and the virus has finally come out in the form of impetigo on her nose and ear!! We are well used to the evil impetigo, it has previously affected her ear and cheek- we've never seen it on her nose before. Inside her nose, on her upper lip, yes- it was so aggressive once it left scars :-( But never ON the end of her nose leaving her looking a little like Rudolph!!!! Thankfully as soon as this appeared she seemed to get a lot better in herself. It's a good job too, because she had a very important event that she needed to be well for! Her sisters 18th birthday. Yes, we can hardly believe Caitlin is 18. But, in the blink of an eye she is an adult. It's left me a little emotional and I'm not fully sure why?! There are so many things Caitlin has to look forward to and such an exciting new chapter of her life, there's nothing sad about it but that's just me, I don't like the end of things. I don't like change- have I mentioned that? ;-) I guess I will just have to accept it!

I thought you might like to see some photo's from the festivities! We had a lovely time and Elin was thrilled to be out so late! Caitlin has many other exciting things to do this week including a trip to NYC with her best friend!!! So happy birthday Caitlin Angharad, big sister extraordinaire!!!

Can't wait to see what the next chapter will bring.....once I've stopped crying......;-)

 

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Ch..ch...ch...changes....

Hi you lovely blog readers. What's new with us this week? Hmmm. It feels like a bit of a 'wrong' week. Staring with the good news, we had a gorgeous weekend with visiting family (baby Gruff!! And his Mummy and Daddy of course) . Gruffy is a cherub and Elin loves having him around. Since he can now speak a bit (clever boy!) he spent a lot of time saying 'El-in' very precisely. He also remembered she likes having her nose beeped, stroked her, brought her toys, kissed her about a billion times and enjoyed the odd game of poking her in the eye. She loved every second. So, so cute. The stage in toddlers before they have a clue that there is anything wrong with Elin is pure magic to me. Toddlers are the only beings on earth that can see Elin in the most pure, uncomplicated, unquizzical way and it's just wonderful to see that wide eyed innocence. To them Elin is like very other being they ever encounter. I love that, though older children bring their own magic in the way they interact with her in spite of realising she is different of course. We're all missing him already. 

But it's gone a bit downhill.  Something changed....and I don't like change. It started with Elin's first seizure since August on Sunday boo! Scary and sad. It ended an incredibly good run for Elin which we are blessed and thankful for but somehow the reversion to dystonia, seizure and her not 'firing on all cylinders' as we say is all the harder following a good spell. Like having your taste of honey and then having to return to normality.  Then the week has continued with a few other little annoyances..it's hard to explain but everything just sort of feels WRONG this week. This is all underpinned by the fact that just lately I have been thinking a lot (too much, probably, as is my wont) about what Elin's condition has done to her physically, and it's not really very cheery reading (sorry!). I've been meaning to blog about it for a while. As she has grown older, there have been very gradual deteriorations in Elin's physicality, especially her hands, feet and teeth. For example what I affectionately refer to as Elin's Jeremy Beadle hand has definitely become quite a lot worse quite quickly (more bent). It genuinely never fails to shock me what her brain damage does to her lovely little body. That sounds daft because we learn at school during our Biology classes just how the brain literally controls absolutely every movement we make from the pupils of our eyes to our little toes. But either I wasn't listening carefully enough during those lessons (quite likely!) or it just is impossible to comprehend until you see the impact a damaged and not-fully functioning brain has on the body.  Elin has contracted muscles due to lack of use, gradually wasting arms and legs due to no muscle build up and curvature of the spine slowly beginning because she can't be upright long enough, her feet have slowly bent too much to properly fit in shoes. Her once beautiful teeth and gums are losing shape also due to lack of use through no chewing and swallowing. It's starting to get tricky to prize her little hands open long enough to fit into her mittens properly. I don't mean to suggest that I tear my heart out about aesthetic issues but all these things have connotations for her health and quality of life/ how comfortable she is in general. Also, I'm not going to lie it does hurt when you have to watch any kind of deterioration in Elin. It also hurts when things affect her beautiful appearance because she simply doesn't deserve to be anything but the Princess she really is. The reason Dentists brace teenagers teeth (like mine!) is because nobody wants to become an adult with teeth sticking out at all angles. Why would we want Elin be any different? Yet for a myriad of reasons she is and will be different. It's out of our control. It makes feelings of anger and frustration about the whole condition and what she has to go through re-surface. That's never fun. But, like everything we just have to become used to it and do what we can to counter act these small changes. There is really no choice. Who would have thought that Elin's brain damage could have not only affected her so profoundly from that fateful birth, but continue to do so throughout her life, simply making life more difficult for her? It absolutely slays me. I always try to be honest in my blog posts and I have been honest here though reading back through it I hope I haven't given the wrong impression. You see, despite how hard it is to see these things happen to her body, Elin is easily still the most beautiful being I have ever laid eyes on and she always will be.Both inside and out. 
❤ you Elin xxxx

"Pretty soon you're gonna get older

Time may change me

But I can't trace time

I said that time may change me

But I can't trace time"

PS We do try not to dwell on these things! Normal positivity shall resume in Drake towers very soon, probably on Sunday when the dank, depressing not to mention flipping freezing week is officially OVER. Then we can get back to behaving like this:

Lots of love
xxx

Ring out the old....

Ring in the new.....and in this case the 'new' is a Christmas with Elin in the BEST health we could possibly have wished for!!! Yaaaaaaayyy!!!!!! We literally could not have asked for more from her and without a shadow of a doubt we've had the best Christmas we can remember. We are over the moon. Elin has been in great health, sleeping well and sitting in her chair. She has enjoyed lots of presents and visits and when family came to stay from London she was even able to sit in a chair long enough to join us all on a day trip to Llyn Brenig Resvoir country park and also have a ride on the Llangollen Steam Railway. She had fun with her little buddies Arthur, Tabitha and beautiful new addition to the family baby Ivy !!! She missed fluffy head Gruff a bit, but he is coming to stay next weekend, as his Daddy was working over christmas , so more cuddles to look forward to next week. Yippee!
Elin even managed to go shopping to Chester today and visit the Disney shop! It was very rainy and there was an icy wind in her face, which is her least favourite thing in the world, so she did amazingly well. We are two very proud and happy parents this holiday.
Happy New Year and here's hoping that the way 2015 ended for us augers well for a bright and healthy 2016 for our girl. I'll leave you with a few photo's to enjoy until next time......
xxx