Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

Tuesday, 11 June 2019

Eleven


Eleven years

Of PTSD
Of sleep deprivation
Of appointments
Of medications
Of feeds
Of therapies
Of fear
Of worry
Of isolation 
Of heartache
Of disbelief

Eleven years 

Of miracles 
Of gratitude
Of amazement
Of wonder
Of pride
Of smiles
Of laughter
Of inclusion
Of happiness
Of believing

Of love.

Eleven years I could not change because to change would to be without you. 

Show me the next eleven years, I’m ready. You are my hero, Elin.
Mum x
 💛💛💛
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Sunday, 24 March 2019

Special

We're going to be in a book!!
I'll start at the very beginning (it's a very good place to start). A couple of years ago I received an email from an Australian journalist, Melanie Dimmit.  She explained that she was writing a book, which would collate stories of SEND parents to help new parents of children with learning and/or developmental difficulties. After her son Arlo was diagnosed with Quadriplegic Cerebral Palsy, she became acutely aware that there was no reading material out there around coping strategies and positive thinking for parents grappling with life-changing news. In a nutshell, Melanie said her book hoped to become something parents would turn to in order to feel better and access strategies (that have worked for other parents) to redirect negative thinking around their child's disability. She had, in googling the subject, come across my blog and was inviting me to contribute to the book with my own words of advice for new parents in my position. 
Wow. I was SO pleased! This has been a bugbear of mine for all time. When you are pregnant, there is a plethora of books you look at for after the baby is born. You buy a couple and excitedly put them on your bookshelf, maybe even in the baby's room. These will help you with ALL SORTS of things!! Things have moved on from the days of Dr Spock and they are even really trendy and funny now with advice about when you can start drinking red wine again and hilarious match stick pictures depicting frazzled life with a new born. These types of books are written by everything from well known celebrities to ordinary Mums with a way with words. They cover every topic from breast vs bottle to weaning, right up to potty training and everything in between.
These books, of course, were worse than useless to me when I got MY baby home. Not a word meant anything to me or our situation, they may as well have been written in Chinese. Social media groups were not a 'thing' then either. The internet was nowhere near, 11 years ago, what it is now in terms of the knowledge we have at our fingertips and the connections we can make. Neither could I turn to my other 'Mum friends' for advice. They weren't just in a different world to me they were orbiting a whole other universe.
So, I have often wondered why there couldn't be a book out there for parents like me. Not even necessarily new parents, as some children do not receive a diagnosis until they are older. Just any parent really who had the rug pulled from under them, who'd had their life turned upside down and with no idea what to do, how to feel or what to think. Melanie had obviously, after the birth of her son, thought the same. Being clearly much smarter and organised than me, she had actually managed to begin to put one together. I of course agreed to be interviewed by her, and then forgot about it completely. 
This weekend Melanie got back in touch. Her book which she has titled "Special: Antidotes to the obsessions that come with your child's disability" is going to be published by Venture Press in Australia and New Zealand in September, available on Amazon. She is hoping that following this, it will be published further afield. The blurb reads "Special is an uplifting, candid companion for parents in the early stages of navigating their child's disability. Combining more than 50 interviews with parents to children with wide-ranging disabilities and professional input from psychologists, researchers and specialists, it hopes to soothe and surprise very stressed and sad people"  So I am totally honoured to be included, albeit in a very small way :-) It represents a pleasing "full circle" moment for me. From those dark days when I had to angrily shove my 'baby books' into the shed because I could no longer look at them, (such was the way they seemed to almost mockingly represent a path I agonisingly never got to travel) right up to receiving Melanie's message this weekend and hoping that maybe my words could give some small comfort to another Mummy or Daddy throwing daggers at the bookshelf in the Nursery. What a circle we have followed, what a path we DID end up travelling. 
How special. 
Hope you've had a great weekend, folks.
Ruth xxx
For more information, follow @the_special_book on Instagram.

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Friday, 1 March 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

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Saturday, 26 January 2019

Smile

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


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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


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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







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