Living with Cerebral Palsy 🍋🍋

Thursday, 20 December 2018

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

Blogger Template Created by pipdig