There's no place like home

(Doorstep polaroid taken by Caitlin at Holly Cottage last month) 

Hi, its been a while! I see I last posted in May, mid lock down. Well we are still pretty much, like most people, on the Corona-coaster, except it has slowed down a bit and changed direction. Normal life seems like a distant memory, as does shopping and going out to meet friends or going out for dinner. But there are chinks of ordinary life re-appearing. We have had some socially distant visits from family around Elin's 12th birthday. It was good to see other humans (It had started to feel like Lord of the Flies in lockdown and I reckon Paul would have cooked and eaten me first, given my covid waistline would probably have sustained him nutritionally until the Autumn). We have been to the supermarket once or twice. Oh- and we have moved house.
Yeah, moving house while socially distancing in a pandemic with Elin wasn't easy (we didn't use removal firms, just moved everything ourselves over an elongated period using our own cars) but it's done now and we didn't just move house, we moved lives.
The new house, our house, is Elin's house. Literally and figuratively. It is designed for her and it is all for her. It is her compensation for everything she lost during her birth. It replaces nothing and yet it enables everything. The new house gives Elin the very best quality of life we could wish for. She is able to access each and every family room for the first time and has her own therapy room/sitting room and hydro-hot tub. She can watch her Disney films and musicals on a decent screen she can actually see without having to go to the Odeon- and the bonus we have our own fully equipped disabled toilet here too (and the Ben and Jerry's is cheaper!!) She has her own patio she can wheel straight out onto in the morning to start the day. We have a storage room for all her toys and equipment meaning they are always on hand instead of having to root for them or traipse to one of our sheds. She can join us for meals in the kitchen (the first time we had breakfast at the table together, in our home home, was an extremely special moment). In the cottage Elin had one room and a wet room. The limitations of this really hit home since we have been stuck in isolation. No room to even wheel her around anywhere. She simply could not access the living room or kitchen at all. We had a beautiful garden thanks to Paul, but getting her in it- not easy. EVERYTHING here is easy. Wherever we go she comes with us. If she isn't having a good sitting day, she has an achheva-bed that can be wheeled around instead. Or, she can sit with us in a choice of rooms, which are light and airy and have a beautiful view. It makes a difference. Actually it doesn't just make a difference, it's changed her life and ours as a family irrevocably.
In the new house, there is also room for family to stay comfortably. This means Elin can be around all her brothers and sisters and nephews and nieces in her own familiar space for the first time. People can visit without having to sit perched on a tiny sofa in her bedroom (where we spent our entire lives). In changing the environment for Elin, the opportunities for her have been opened up beyond our expectations and we are grateful every single day that she has been afforded the opportunity to live somewhere designed especially for her every need, which we know is a luxury lacking for a lot of children in her position, and something we wish with all our hearts could be a universal privilege.
On that subject this house brought a heavy whack of a rare type of stamp duty- guilt. The house is for Elin, ergo, we would not have need of the house if Elin was not so severely disabled and had not been so badly injured due to the catastrophic mis-management of her birth. To say this predicament is a double edged sword is an understatement. Elation tinged with shame/guilt/truama/regret is a difficult emotion to process. I say this not to make you feel we are unhappy or ungrateful, we are the opposite. We are beyond happy and thankful every single day that Elin has been lucky enough to receive what she deserves in terms of a living space. A space that genuinely is changing her life as we speak. (We adored the cottage, we had been there 18 years. I moved in when I was 21, the walls have witnessed my entire adult life, we never saw reason we would ever need to leave. But the 22nd July 2008 heartbreakingly marked a ticking clock of realisation that our beloved cottage would one day no longer be a place we good realistically/easily inhabit) However please also understand we can never shake the feeling that something so wonderful has come off the back of something so, so awful. It's a very complex feeling, to have something amazing because the worst thing imaginable happened to Elin. But it is a feeling we are learning to embrace and deal with and hopefully one day put to bed. Because we know, that none of this truly compensates for anything Elin lost. I would live anywhere, in a tent in someones garden or in the worlds smallest most cramped  space if I could hear Elin's voice. If I could do the ordinary mum-daughter stuff with her. If we could live a life without medications and hospitals and equipment and fear.

I would trade the footprint of this amazing house for a footprint of Elin's in a heartbeat.

So the guilt has to stop because this does not make everything ok. We were so happy in our cottage and we would have managed and we would have been happy forever because we were together. But it would not have been right for her. It would not have been easy, it would not have afforded her what she deserves. What the move has done, is it has made Elin's time on earth the most comfortable and the best it can be, whilst we borrow her from the universe, whilst we show her every single day what is possible for her for as long as we can. She deserves absolutely nothing less. She deserves the world. We can't give her the world, but we can give her this house and our love and family time and joy and anything else humanly possible. We have a proper home for her now and it's been a long 12 years in the making. It was worth the wait.

There's no place like home.

Home cinema screen in Elin's therapy room. Favourite films with big sis in the comfort of her own home! 

Getting a really big girl (snuggles with Mummy in her new bedroom)

Look at me in my new house!

At the breakfast table. A simple joy most families take for granted.

Watching her projector from bed :-) She never had a wall to project onto before! 

Happy 12th Birthday Elin

Elin's patio. Chilling with Daddy.

Playing with birthday balloon and space blanket. 

Looking out of her therapy room patio doors whilst relaxing on her acheeva.

Loving her fish lamp!

Trying some switching. Good girl!! 

Covid style afternoon birthday tea with just close family members.

Daisy daisy.

I wonder where Elin is off to??

Oh, HELLO!!!!! 

"If I ever go looking for my heart's desire again, I won't look further than my own back yard. Because if it isn't there, I never really lost it to begin with. No matter how our homes look, we people of flesh and blood would rather live there than in any country, no matter how beautiful, because that is where our family and our hearts are..... and Oh! Aunty Em....theres no place like home!!!!" 

Frank L. Baum

The Wizard of Oz, published 1900. 

In Praise Of Relaxed Screenings

“Relaxed Screenings” or as they are sometimes called, “Autism Friendly” screenings at cinemas and theatres have been widely around, a quick google search tells me,  since about 2011 (although if you think about it, it kind of beggars belief that it took so long!) These screenings have subtle changes to the cinema or theatre environment, which means that people who have sensory difficulties have a more positive experience than they would in a traditional cinema setting. Changes include:

-Lights being kept at a low level

-Lower than usual sound levels

-No trailers or adverts-just the film

-Allowance for increased movements and noise.

These screenings haven’t been something we have always felt the need to bother with. Elin has historically been ok at the cinema and on the rare occasion we might have taken her to the theatre, enjoying the experiences without over stimulation. However as she has matured, we have discovered this not to be the case. The adverts and trailers (which these days seem INCREDIBLY loud-or am I just getting old???) upset her. They make her jump and the surround sound disorientates her. The noise triggers her dystonia and before the event has even started, she is struggling to focus.  The pitch black makes it hard to manage her physically and tube feeding or medicine administration is especially difficult.  Just recently, a new problem has reared its head for us. That is, that when Elin becomes over stimulated or over excited, she gets very, very noisy. She starts laughing so hard it can turn into squealing.  This is actually a lovely reaction and shows a high level of awareness, which is great. But, did I mention …its NOISY. This is problematic if it is prolonged, or regular throughout the showing, because it’s so distracting for other audience members.  Now, I’m all for allowing Elin to express her joy, of course I am. I will fight Elin’s right to equal experiences despite her disability to the death. But true equality has to be equality for all. So when Elin gets really, really, noisy for prolonged periods in a cinema I can start to feel uncomfortable. I don’t want to interrupt anyone’s fun. More importantly, I don’t want Elin to be seen as an annoyance or a problem. I also understand that these events are not just a special experience for us, it a special (and often expensive!) experience for all other families there too. I don’t believe in Elin’s right to enjoy herself at the expense of the enjoyment of others. It pains me to say it, but it just doesn't feel fair.

So after a particularly difficult visit to see “The Lion King” this Summer, where we ended up having to leave, due to little foghorn Drake, we decided that where possible we would only access relaxed performances from now on.  How lucky are we that this is an option for us now? True inclusion can mean I think, not lumping everyone together regardless of ability to allow them the ‘same’ experience, but providing tailored versions of that same experience in order to allow appropriate opportunities, choice and options.  Bravo to those venues around the country for realising this.

This weekend we have been to see the Disney film of the year and highly anticipated sequel “Frozen 2” . I was really excited because I had such good memories of the first one, Elin had loved it and it was six years ago when our trips out would more often be misses than hits, so it had meant a lot to have a successful trip out. We spent, like most families, the next few months listening to the soundtrack on repeat and Elin couldn’t get enough.  The great thing about Disney films are the musical numbers and advanced graphics. They are meaningful to Elin and tend to keep her engaged way more than any other kids films out here. I’m pleased to report our trip echoed that of our trip six years ago. She absolutely loved it and sat in her chair the whole way through the film, laughing loads. She didn’t just laugh at the film, she laughed at the other children audibly enjoying their experience too. When she began, as she was bound to, getting a little over excited, we didn’t feel any of the stress of previous performances that she might be distracting other people.  It didn’t matter.

By introducing these special screenings and making some simple changes to an ordinary format, the Odeon (and other participating venues, of which our personal experience extends to Chester's ‘Storyhouse’ theatre too) have given the opportunity for families like ours to have an extra-ordinary time. Thank you. Sometimes a small change can make a big difference.

"Frozen 1"  2013        vs         "Frozen 2" 2019

Angel of Anglesey

Well February half term brought two surprises, one extremely wonderful and unexpected break and one bone achingly sad piece of news. These two surprises provided a contrast of emotion so complete this week that I found it quite overwhelming. Deep sorrow flanked by deep joy, or was the joy so potent because it was so infused by a sense of gratitude, a feeling that once again we find ourselves in the amazing position of being able to enjoy such quality time with Elin in the face of the devastation of another family we know?!? Someone once said to me you can’t feel total happiness until you have faced total despair. I would say that is a true statement. Certainly our emotions this week were all the more heightened for knowing, always, just how blessed we were to be able to experience such a lovely half term with our girl. We will never stop taking this position for granted.

So we went to an utterly gorgeous holiday home in Anglesey (thanks to lovely friends of my Mums!!) where we were already lucky enough to stay last October. Crazily I hadn't been there since I was way too small to remember prior to this! Never in a million years did we dream when we booked to stay in the stunning, accessible beach front home that the weather would be more typical of Miami than Wales in February. I might tweet my photos to Donald Trump. If global warming  doesn’t exist perhaps he can offer me an alternative explanation for the unnervingly incredible weather!  Feeling horrendous about our poor dying planet doesn’t have to stop you enjoying the sun though, right? The two are not mutually exclusive (are they!?!!!) So we enjoyed it! I think it’s fair to say it was just what we needed. 

There is little in this world so calming and able to give perspective so brilliantly as gazing out at the sun- soaked sea. It just makes you think everything is going to be alright. 

Even better than the weather was Elin’s mood. Neither of us can remember such a successful break from start to finish including all sitting and all car journeys. She has been outstanding. We thought last time we visited that she loved Anglesey, now we know for sure. The beautiful open plan beach house which is full of light, the salty air, the sound of the sea, the sunshine- the combination- who knows? Something about this place agrees with Elin. Can’t say I blame her. We are already booked to return twice this year and hopefully in the future too. I think we found our home-away-from-home happy place. When Elin is happy, we are overjoyed.

So as you can see from the photos, Elin really did have the best time. We didn't do too much! We walked (rolled), we talked, we found some lovely little cafe's, we sat on the beach (even though we weren't dressed for it!), we gave her lots of cuddles. We even ate good tapas. In Anglesey! Who knew. Everything and anything delighted Elin this week. She was smiling and laughing from the moment she opened her eyes to the moment she closed them at bedtime. It was joyful, but as I've said, never not tinged with a certain sadness. I thank god that Elin knows nothing of this sadness, nor of any sadness and never will. It is the one part of her condition that I can honestly say I am glad of. Elin has the "Eternal sunshine of the spotless mind" and boy, does she deserve to.

When trying to process impossibly sad news all we can do once again is take our lead from Elin and face negatives with positives, keep strong in the face of adversity, remember all the good things and acknowledge that we will never forget a beautiful angel with a truly beautiful soul and what we have all learned from being touched by that soul, as beautifully as the sunrise touches the sea-stunningly, wholly, breathtakingly- but far, far too briefly.

Take care everyone

Ruth  x

Mary Christmas!!!!

I can't quite believe it's that time of year again!! Merry Christmas, everyone! I have always loved Christmas but it's fair to say last year was probably one of the worst Christmases ever for many different reasons :-( We sort of stumbled through it and I survived on box sets (namely "Feud: Betty and Joan"- classic Hollywood camp glamour) and copious amounts of Bailey's. Fortunately none of that was anything to do with Elin and whilst Christmas 2017 set a bit of a precedent for some tough times in 2018, we have also been blessed again with an amazing year of good health for our girl. 

At the beginning of December though, Elin had an unheard-of week off school when she came down with what was essentially just a bad cold. Unfortunately it set of a bad pattern of dystonia which we had a bit of trouble controlling. Thankfully the dystonic cycles stopped just as quickly as they and started (just when I thought I was starting to lose my mind having to watch Elin go through it and just when we thought we may have to consider a dreaded hospital admission). Nothing like a bit of a fright with Elin's health to remind you how lucky you've been recently!!! Anyway her speedy recovery meant that Elin was back in school when the week was up, happily in time to rehearse for her final primary school Christmas concert.

You can imagine how we felt that Elin was undertaking her Year 6 school play. This is a school year of 'lasts' for Elin (last school photo, last visit to Santa's Grotto, last class party etc etc) and as I've previously mentioned I'm finding it difficult! However, I'm really trying to keep in mind that next year, her first year of secondary school, will be a year of 'firsts' and that is pretty exciting I reckon. So back to the play, the magnitude of which is difficult to describe. As parents of a child with PMLD we crave 'normal' parental experiences to enjoy because quite often they are few and far between. I've blogged so often in the past about what Elin's school Christingle and plays meant to us, I don't think I need to repeat myself again here- in a nutshell though, it's just so very emotional because ultimately it's the end of the year and as parents we are sitting there again, all feeling the same, thinking about our own personal journey's with our super-special children and also all celebrating how amazing they all are collectively. This is huge for us and difficult to articulate, especially after losing two beautiful little friends of Elin's since this time last year. The Christmas show is not only special because its such a joyous experience for us as parents of children with PMLD, but because it's reflective, too. That is the nature of the lives we now lead. 

Suffice to say we honestly didn't mind what role Elin got this year (previous gorgeous years have included a sheep, a penguin, an angel, a cowgirl and the star of Bethlehem!) But lets not mess about. Everyone knows in primary school life, the part of Mary is basically the 'King Lear at the RSC' of Nativity roles. It was a role that escaped me as a child and I'm still bitter to this day (I'm not kidding- Emma Bruce if you're reading this you robbed me!!)  Imagine our delight then, that following in the end-of-career footsteps of all the theatrical giants such as John Gielgud/Laurence Olivier/ Ian Mckellen et al - Elin would be ending her own 'run' of her whole school career at Ysgol Y Canol by playing Mary :-) So in other words, she was the Glenda Jackson of the show!!!

In a lovely parallel, Elin's little friends Dafydd, who joined the school at the same time as her and will be leaving for secondary school alongside her, played Joseph. As they entered to the song "Fools Rush In" by Elvis and then danced together (courtesy of their fab support workers and some nifty chair-action) there wasn't a dry eye in the house. Well, not a dry eye in the family, certainly!!! (Big sister Caitlin had very happily made it home from London in time to catch it!!) I was so thankful that Elin was in such a good place this week (she has been amazing) as we got to see her really enjoying her time on stage and we now get to treasure that memory for ever. I'm sure 'big school' will continue with school plays and Elin will get to flex her acting muscles again but it was lovely for her to 'exit stage left' on such a beautiful note, in a beautifully delivered show which focused on each and every one of her equally beautiful friends, with her own little school family surrounding her. 

Elin's boyfriend, Llew, you will notice, was a cow!!! The cutest little cow EVER!! (Photo published with kind permission from Dafydd and Llew's families)

Well as you can imagine this put us in the mood for festive cheer and we were lucky enough to have a wonderful experience last night again at 'Chester Zoo Lanterns'. It was simply quite stunning. The best year by far in terms of the lanterns and puppets. I LOVED that the interaction was back this year after a bit of a disappointing year last year. As the staff operated giant, lit up puppets or were dressed up, it meant that they could interact so much with Elin and she laughed from start to finish. She also sat better than she ever has done- not a whiff of the dreaded dystonia. It was, for big kids like us, magical and so gorgeous that Elin was able to get so much enjoyment from it. Some truly lovely memories were made there last night that we will never forget. 

African Plains

Elin leading the way with her special pink lantern

Giant Butterfly puppet was stunning- the operator was kind enough to flap its wings for Elin a lot which is why she is smiling here :-)

The entrance 

A giant racing snail! This reminded us of 'The Neverending Story'!

 The Giraffe puppet was my favourite- even though it got so close we were picking Giraffe eyelashes out of Elin's mouth for ages afterwards!!!!

 The Emu puppet nibbled Elin's hand!! Kept expecting to see Rod Hull ...

 We aren't sure exactly what these were but they were beautiful!!!! 

Elin in Wonderland!!!! Eat Me/ Drink Me?!?!

 A very funny White Rabbit!!!!

 This was a cheeky squirrel puppet who jumped all over Elin thanks to it's lovely operator! I loved that they took the time with her to really let her take it all in!! 

 Tunnel of lights!!!!!!

 These were kind of "Ombres Chinoises" rotating lanterns with forest silhouettes, lining one of the paths and they were just beautiful.

 What's a Christmas experience without a snow machine?!?!!!!!!!!

So as you can see we had a ball, we were doubly lucky that there wasn't a drop of rain the whole time we were there especially given the day before and what the weather is doing today!!!! I highly recommend a visit for any children like Elin and it goes without saying any children (or adults!) in general! There may even be a few tickets left before Christmas :-)
In between these two lovely events we even managed to squeeze in our traditional Drake-family snuggle-on-the-sofa Christmas film afternoon! I can highly recommend "The Chrismas Chronicles" on Netflix for slightly cheesy but heart-warming festive fun!!!

There are four days left to go and we have one more treat coming up- we're off to see the Wizard!!! Tomorrow afternoon we will be taking Elin to the 'relaxed' performance of "The Wizard of Oz" at Storyhouse, Chester. Regular blog readers will know it's my favourite children's film of all time. I've had a love/hate relationship with stage adaptations because of this (umm - how would you EVER replace Judy Garland?!?? Its an impossible task) but I'm sure Storyhouse will do a great job. I've been volunteering at Chester's Storyhouse for fourteen months now and I just love the place- they can rarely do wrong in my book!! More than anything I just want Elin to enjoy it and I'd be lying if I didn't say I was getting a huge buzz out of taking her to see it, again a "normal" experience I hoped I'd have with my kids one day. Taking them to see "The Wizard of Oz". Well now I get to do just that. HOW amazing is it that most theatres these days have relaxed performances? I count our blessings each day that we live in an ever inclusive and understanding world. I will really try to update the blog when we have seen it but if I don't get chance prior to the big day I certainly will afterwards, promise.

In the meantime, wishing all you amazing blog supporters a wonderful holiday!! We are dispensing with tradition slightly for a change this year and staying in Wales for the festive period, which brings some lovely positives and some really sad negatives but I guess, at Christmas, sometimes you just have to admit ..

There's no place like home.

Merry Christmas, folks.

Ruth xx