Living with Cerebral Palsy 🍋🍋

Saturday, 26 January 2019


Today, there was a rainbow outside Elin's window. It was really beautiful. It made me cry. I cried because I wanted to share it's beauty with Elin and I couldn't.  She can't see that far away and she can't understand my descriptions. For Christmas she had a rainbow projector light which creates a lovely arc of a prism of colours across her bed. I was thrilled with it because I thought finally, she can see a rainbow. But today it doesn't feel like enough. Today everything feels a little dark, a little heavy.  I want her to see the real thing, in nature,  not something powered by batteries, as she sits as patient, serene and as good-humoured as ever in the relative prison of her bedroom. It made my heart ache.
Today is not just about the rainbow. Today is the end of a long, miserable mid-January week. It has also been a week of unhappy anniversaries. 8 years ago this week, Elin lost her gorgeous friend, Harvey, whose photo sits in Elin's room and who we still miss and always will. Also this week, Elin's cosmic twin, Ellie, should have been celebrating her 8th birthday, but she is forever six years old. In addition, on Wednesday, the world said goodbye to another old school friend of Elin's. An inspiringly strong, cheeky, joyful, clever young lady. Today, I think, is about all of that.
When you have a child who is severely disabled and/or described as life limited, there is a lot to process. I think the entirety of this blog is testament to this. None of it is easy to digest, it takes years. You never get over it, you learn to negotiate your new normal. Part of the new normal is that you suddenly realise somewhere along the way that children you get to know and love will pass away. Families you share each joy and sadness with on this journey will go through the worst grief imaginable in front of your eyes. You have to come to terms with the fact that one day, this could be your child and your family.
Since Elin was born the children we have lost from our lives has reached double figures. Nothing and nobody prepares you for this. In truth, it's probably something you just can't 'prepare' for. The strength of the families utterly humbles you, the legacy of love the children leave behind floors you. The outpouring of kindness and support to these families inspires you, the reality of the hole that is left devastates you. Sometimes, it all feels too much to bear. There is just too much sadness, it starts to get impossible to process, to make any sense of. It never gets easier (and why should it?) in a way, it gets harder. With the passing of each of the eleven children that have left our lives so far, the world just seems more cruel, more unfair and more terrifying.
So how do you deal with it?
I suppose you navigate the sadness by thinking of all the wonderful memories you have of these amazing kids. The memories you know will stay with you forever, the ones that will, when the initial shock and grief has worn off a little, make you smile. Isn't that the only way anyone can make grief bearable at all? Also by looking to Elin. She, as ever, teaches us so much. As I tried to pull myself together after the rainbow set me off today, she laughed. She laughed A LOT. It was as though she was trying to tell me she didn't care about seeing the rainbow. In the end I started laughing too. As ever, we take our lead from her, our sunshine girl, because she shows us the way. Sometimes, there is nothing else left to do but smile, even if you have to have a really good cry first. Smile, remember the good things, pick yourself up and just try to get on with it. Today, I'm smiling for you, Paige. There were so many good things in your life and you gave so much joy to everyone who knew you. We will never forget you.  If I know you at all then I know that somewhere you are smiling too.
Have a good weekend, folks.
Ruth x


Saturday, 5 January 2019

Goodbye 2018

Hi everyone! To start where I left off, we LOVED The Wizard of Oz at Storyhouse, Chester! After the Lanterns at the zoo it really kicked off Christmas in a beautiful way for us- it was just magical to see Elin's reaction to what was happening on stage, she adored it! Her favourite was the Wicked Witch- she laughed and laughed every time she was on which was very cute and very typical of Elin to decide she liked the baddy the best!! She spent a bit of it in her chair and then the rest of it on Daddy's knee. When the characters came running through the audience at one point, the Cowardly Lion stroked her face and her response was amazing, I just wish I'd had my camera out!! She really, really enjoyed herself and even got to meet Toto afterwards! It meant such a lot to me to share this experience with her and it will be one of my fondest memories of this holiday period for sure.
I hope you all had yourselves a merry little Christmas! Ours was lovely, if not a little blighted by illness- not of epic proportion thank god - but enough to keep us indoors repeatedly coughing and sneezing for a few days. Elin, mercifully, was the least affected presumably having already had it a couple of weeks ago, but chose Christmas day to be at her worst poor thing. On the bright side the three hour nap she decided she needed after the exhaustion of opening her presents coincided with Christmas dinner which was fairly handy for us bless her!! Paul pulled it out of the bag for the millionth year on the trot and we had a gorgeous meal with my Mum, Nan and Grandad    (who have made the move into a residential care home this year but were still super keen to spend the day at our cosy little Christmassy cottage as usual)
(My absolute legend of a Grandad Ted)

So given the illness that was descending on Christmas day I think Christmas Eve was actually the better day for Elin, to be honest it's my favourite day of the holidays anyway!! We went to watch the children's Nativity in our local church, which is a beautiful building and one I only frequent once a year on Christmas Eve (what do you mean christianity is for life, not just for Christmas?!?!)  but regardless of my terrible yuletide hypocrisy it's an absolute must for us as Elin just loves the tree, lights and singing.  There is also something very lovely on a spiritual level about being there somehow- we went so often with our primary school just over the road as kids that it does hold some lovely memories (and some not so lovely memories like when I was cruelly denied the role of 'Mary'- see previous post!) Anyway this year was no exception and Elin had a lovely, lovely time. She basically laughed all the way through!
It was then time to get some new jim-jams on and wait for Santa to arrive :-)
After Christmas Day Elin perked up a little bit and enjoyed spending Boxing Day day with big sister and family. Elin can't get enough of Caitlin so this was like heaven to her! She was one happy girl!
Elin just dressed super-casual for boxing Day. Ha!
What followed was a few days of all of us, but especially Paul, being pretty wiped with the Christmas lurgi that had been doing the rounds. It's a shame I contracted this strain and not the tummy bug that was also spreading like wildfire as I could do with a helping hand fitting back into my jeans, but I guess on the whole I really wouldn't want Elin catching that so thank heaven for small mercies.
Those days passed in a bit of a fug of hot toddies and Netflix so it was very welcome to get out just before the new year for a nice walk by the Llangollen canal. Elin was obviously so pleased to be out she forgot to be dystonic, so all in all it was a massively successful outing!!!
 Elin enjoyed playing with her new toy and watching us take the tree down when we got home.
On new Year's Day we happily  managed to get to Yorkshire to visit Elin's big brother Gareth and his wife Marianne who were also hosting Elin's big sister Beth and her partner Adam, plus two lovely friends, plus four out of six of the grandchildren!! A very happy visit and Elin thrived on the company of the little ones, as she always does! Miraculously, she had still not remembered to be dystonic by this point so the journey there was pretty pleasing too! 
Actual real footage of Elin sitting nicely in the back of a car!
 He ain't heavy.......he's my brother!
Gruff proudly enjoyed showing Elin his Dinosaur jigsaw!
Baby wrestling!
Taid grappling with 3 out of 6 grandchildren (Agnes, Bobbie and Ivy)

As if that wasn't lovely enough, the very next day when safely ensconced back at the cottage we had a wonderful surprise visit from my Uni friends Claire and Michael who were travelling down from Edinburgh to see Claire's Mum in Liverpool. When we had our awesome Edinburgh visit in the Summer, Claire and Michael were on holiday with their boys Caleb and Archie and it was my only regret that we missed them! So it was lovely to see them and introduce their children to Elin- we have seen each other a lot over the years but never managed to get the kids all together, so this was super special and a lovely treasured memory with which to begin 2019.
We will round off the holidays tomorrow by seeing Pauls brother and his wife and also his cousin and family who are visiting from Australia- so more children for Elin to play with! We have obviously also enjoyed the company of my family over Christmas too (I think I see them too often to remember getting photos oops!) and plenty of other special friends who mean a lot to us and to Elin. I hope this lovely family/friends time is a sign that the year will progress as nicely as it has started for team Drake and more importantly for Elin (I'm not sorry to see the back of 2018 and am really looking forward to starting a fresh new year) She has, of course, been spoiled rotten by everyone but not just with presents- with time and lovely thoughts and good wishes too. Friends and family mean the world to us and are what sees us through the hard times (like today, when Elin remembered about her dystonia at the worst possible time but I'm not blogging about it because you know,  POSITIVITY and all that!!) 
So truly, thanks for the love, folks. It's all you need.
Happy New Year. Here's to 2019.
Ruth xx

Blogger Template Created by pipdig