Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

Friday, 12 October 2018

Rainbow bright

"The greater your storm, the brighter your rainbow" said an inspirational quote I once saw on a wooden plaque hanging in a gift shop. Unlike some inspirational quotes, it didn't cause me to snort sarcastically and roll my eyes so far into the back of my head they almost disappeared. Because it's true, isn't it? The harder you've had things, the more you appreciate the good times. Well, this is definitely true of us anyway and basically the premise of this blog really, so I have never forgotten that saccharine but spot-on little saying.  I think as humans we instinctively search for justifications and answers to bad things that happen, so this saying fits in with that psyche. Today, it is as relevant to us as ever. Exactly three years ago we left Children's Ward after yet another admission. The nurses- who felt more like friends by this point- had made me the usual tea and toast in the morning, whilst I had groggily dressed inside our 'cube' room. The beeping of the monitors attached to Elin all night echoed through my memory like a never-ending reversing bin lorry that was flattening my sanity.
I couldn't, then, count how many times we had stayed over in hospital with Elin. I'd be interested to know actually. I do know that by the time she was twelve weeks old, we had spent seven of them in hospital. This set an unwelcome precedent for the next seven years of her life. It utterly blows my mind that there are some parents out there who have never entered a hospital ward with their child, such was the normality of the situation to us. First name terms with all the staff and a knowledge of the doctors rota's more accurate than their own (probably).  Let's not forget the ambulance rides and the times we were blue-lighted into A&E because that was LOADS of fun! Once, I did and ambulance call and run to hospital solo as Paul was away visiting family for the weekend. I didn't tell him until he got home because I knew it would ruin his trip and had to avoid his phone calls for 24 hours so he wouldn't guess where we were!! So even ambulance rides lost their vice-like grip of terror on us in the end. I suppose it's true that you can get used to anything if you deal with it long enough.
The thing is, one your child has been rushed by ambulance to hospital (normally because of seizures in Elin's case) and you have taken a call from the school to tell you to get there as fast as you can, it becomes very difficult to ever relax again. You are on high alert constantly. For years, the generic ring of a mobile phone in my proximity would set my heart pounding. I felt that my mind was always elsewhere. It was with Elin.
How lucky we were during this period to enjoy the care of the staff on Children's Ward. Some of these same staff, by the way, still follow this blog and even contributed to the stunning £1,400 we collected for charity in the name of Elin's 10th birthday. They cared about us, even in the malaise of the ravaged, busy, exhausted days working in the confines of terminally compromised NHS. These staff ( and the school staff too)  were the singular reason we made it through that period of time without losing our minds. I'm not sure if everyone that ever made a fuss of Elin on that ward, or greeted us with such open familiarity and constantly took time out of their day to reassure and look after us, truly knew the impact of their actions. It was huge.
So, three years ago today we were discharged from the ward after a bug/breathing difficulties for Elin. We left our favourite cube, waved to our favourite nurses on the way out (they were all our favourite!) and joked we hoped we wouldn't see them again too soon. We didn't. We haven't had a single hospital admission since then.
This luck is extraordinary, just like Elin. We were told quite categorically by a consultant at Alder Hey when she was four months old that Elin would spend a (short) life yo-yoing in and out of hospital and for a while it seemed like this may be the case. But it seems a different lifetime now, I can barely remember that feeling of continual anxiety. It's so freeing, to be able to release the day to day worry that we carried around like a weight on our shoulders. But, it's never quite far away either.  I don't think we'll ever feel that those days won't ever return because we are far too superstitious to assume. We know how quickly things can change for children as vulnerable as Elin. We can only hope, be thankful, once again marvel at the amazing strength and resilience of our little fighter and make lemonade while the sun shines. God knows life has served us enough lemons.
October 12th 2015. Last Children's Ward admission. 

Have a wonderful weekend folks. Stay hopeful.
xxxxxx


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Friday, 28 September 2018

Wedding Belle

It seems life is full of milestones for Elin at the moment! 10th birthday, 3 years hospital-free (more on that in another blog!) and the final year of primary school to name but a few. Last weekend, she hit another one. First time being a bridesmaid!! This was a big one for me. It's just another right of passage that- all those years ago staring at a tiny baby on a ventilator in SCBU- I never even considered Elin would be lucky enough to make. I never realised how much I long for Elin to have ordinary little-girl experiences until they come along and then I can't believe our luck. It's an extremely fortunate position to be in.
It goes without saying how beautiful she looked and how proud we were to see her at my twin sister's wedding. She had a cold, had been up most of the night before and still managed a twelve-hour day in a completely unfamiliar environment with lots of voices and people she didn't know. What a trouper. She did minimal good sitting, but this was fine- I hadn't really expected her to sit well all day, it's sod's law after all (she had mostly done great sitting all week!!). I didn't worry about it. A few years ago we couldn't have even been sure she would make the day, certainly not last the whole day so we will, as usual, take small blessings as they come!!
Elin did manage to sit beautifully as she went down the aisle, pushed by my lovely Mum. I was so glad Mum had such an integral role in the service, that is, delivering the most important guest down the aisle!! Elin was followed by Caitlin and then me (I feel like I'm maybe a bit old to be a bridesmaid but I enjoyed every second and was grateful nobody tried to saddle me with the god-awful 'Matron of Honour' title!!) My photo's, by the way, are not great- surely the sign of a good day- far too busy having fun to get great pics!! That's what the photographer is for and we are looking forward to seeing the 'official' pics very soon! (I'm looking down in this shot presumably because I can't believe I have to stand next to a gorgeous 20-year old all day!!)
Caitlin and I had a ball being bridesmaids (a bit too much fun - I was still recovering on Monday and rumour has it Rosset Hall ran out of red wine that night!!). We shared a room in the hotel, as Super- Dad Paul brought Elin home in the evening once she had seen the night guests- we knew it would all be getting a bit much for her by then and Paul knew he would be dying for a cup of tea and a ginger biscuit! One of my favourite parts of the wedding was getting to spend some quality time with Caitlin even if she did lead me astray and make me do shots like a student!! It's completely her fault that I drank so much, honest!! Although if you can't drink a bit too much at your only sisters wedding then I don't know when you can :-) Caitlin sang at the ceremony and was, of course, brilliant. Regrettably we didn't get a video of her renditions of 'Fools Rush In" by Elvis, "At Last" by Etta James, or Elton John's "Your Song"-but suffice to say the registrar couldn't complete her tasks because she was so busy crying!! We were once again extremely proud. Elin was of course delighted to spend the day with her favourite person.
   My sister and her wife Katy looked absolutely stunning.  It was so amazing to see them both so happy and to share their perfect day. It was a joyous day, too, after some difficult times for the family this past year. I can't tell you how good it feels to know that your sister has found a life partner who is so awesome as Katy and who deserves her so thoroughly. Weddings are just such gorgeous, life-affirming occasions aren't they? Seeing all your nearest and dearest under one roof is truly good for the soul. The way everyone comes together to celebrate (in this case from as far away as Australia!!) and just pulls together to create a magical day for the special couple can't help but leave you with the warmest and fuzziest of feelings!! It makes you feel like everything will be ok. Love triumphs. Always.
Thanks to everyone who came and made a real effort to ensure the day was special, it really meant a lot. What I loved was seeing two families join together and just enjoy the amazing atmosphere that comes about when two people promise to spend the rest of their lives together. What could be better? On an even more personal level I think what Paul and I will cherish from the day aside from this is the image of Elin surrounded once again by such immense happiness and love. Tomorrow is twelve months since we lost Elin's little friend and cosmic twin, Ellie. We know how lucky we are. We take nothing for granted.
Have a great weekend, folks. May you always be as loved as a newlywed and as happy as an ageing,  drunken bridesmaid :-)
Ruth x



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Thursday, 23 August 2018

Reality Check.

 Sometimes, during the 'new normal' of the life you have cultivated as a parent of a child with quadriplegic cerebral palsy,  you get smashed straight in the face with a wave of grief and nausea when you least expect it. In my experience, this happens less and less the older your child gets, until you almost forget your 'new normal' because it has morphed into what is now just 'normal'. This is a euphoric state that you could only dream of when you embarked on the new life, the one you didn't choose- the one that started when your baby was born not breathing. Back then things felt that they would never be the same again, the world collapsed. It's life Jim, but not as we know it.
But things slowly and painstakingly change, they get better. Does time heal all wounds? Or is it what you do with that time that does?
I know we are lucky. Elin is doing well and that has changed everything as she has grown in the last ten years. There is reduced stress when you are no longer having to call an ambulance to deal with seizures regularly, no longer yo-yoing in and out of hospital. You start to forget to worry. Then you stop worrying almost completely. Life becomes settled, there is a status quo. You can even go out for the day without putting your phone in your bra which you used to do daily (so terrified were you of missing a call from school/home/babysitters) Sadness about what happened to Elin rarely surfaces, you are now just getting on with your new life as though it had almost been meant to be.
Almost.
But then, a little face-smash occurs. A little reminder. Don't get comfortable, things could change and they do. Recently, two things happened in the same week to contribute to one of these moments. Firstly, another one of Elin's little friends passed away. This is something that we will never get used to, will never stop halting us in our tracks and will never ever stop hurting. There is nothing more poignant to remind you just how precarious life is for our beautiful, vulnerable children. Elin's little friend, who used to attend her school, did not have the same condition as Elin, but she had the same vivaciousness, bravery, cheekiness, mega-watt smile and ability to make everyone around her fall instantly in love with her through her beautifully expressive eyes and face of pure sunshine. She had the same family- a mummy and daddy, sibling, grandparents and wealth of people who cared about and loved her all around her. We know each other, our families. Even those we've never met. We share a common ground nobody else can understand. So a loss like this is devastating for all and we will never forget these children who so richly deserved more. It hurts beyond words.
Secondly, Elin had an appointment at Alder Hey about her hips. She has these appointments annually and in truth I mostly completely forget about them from one year to the next. Her right hip is sub-flexed, meaning it is coming out of it's socket. This is totally normal and in fact, common, for children of Elin's age who don't weight-bear. One year when we went it had even popped back into it's socket a bit!!! I've never really been too worried about it. But this time, it had protruded a little further. The consultant had a student in with him, so perhaps his candidness this time was centred around that. He was using us a teaching exercise. He basically let us know that we could expect Elin's hip to come out of it's socket altogether some point in the future. This could be the near future or take years to happen. When it does, it may cause Elin massive pain or discomfort or not bother her at all. At this point surgery would be considered based on her pain levels and handling issues due to the socket being out of joint (changing nappies and things can become very difficult). The surgery, he explained, was not easy and entailed weeks and often months of recovery. Incase his medical student was in any doubt about this procedure, the consultant began to remonstrate about the risk of death during such surgery. SERIOUSLY! An operation that she may or may not be having possibly one or ten years down the line!! Slightly unnecessary I felt but then as Paul reasonably pointed out to me afterwards, we do ask a lot of questions too. He probably thought we wanted the big picture..you know..since we asked for it! Some things I'm better off not knowing until I need to though. It really bothered me. It reminded me entirely of Elin's vulnerability, the unfair nature of her condition- the way we are powerless to change certain things about her path.
Why do we have to think about these things? Why will we one day have to decide whether to put Elin through a big, nasty operation or not? Why will we have to watch her in pain? Why are we damned if we do and damned if we don't?? Why do we have to make these decisions and then deal with the consequences when some parents will not set foot through a hospital door with their child in their entire life? Why did this even have to happen? Why do these things still take me  back to the day Elin was born as if it happened yesterday and begin my struggle with what happened all over again?!!???
Who knows. Not me. But I have to accept that knowing families who lose their children and dealing with difficult decisions are just part of our life, it is how it is. This doesn't mean I have to accept them as normal though, because they never will be and the day they feel normal would perhaps be the saddest and most heartbreaking of them all.
So maybe we all need a little face-smash now and then, if only to serve as a reminder of where we are in time, or rather, where we've not yet got to.
Sometimes, when life gives you lemons, you have to just cut them up and put them in a gin and tonic.
Have a great weekend folks, this face will be my positivity -you're welcome to use it as yours, too :-)
Ruth x


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Thursday, 9 August 2018

Elin in Edinburgh


Let me start this post by saying my heart is Welsh. But my soul, I think, is most definitely Scottish.
Almost 20 years ago I boarded a train in Chester, got off in Edinburgh and fell in love. Totally, completely and utterly head over heals in love with the city. I was auditioning for Drama School and I knew as soon as I arrived that it was the place for me. Lucky, then, that Queen Margaret's University College accepted me and along with nine other girls and ten boys we became what would be the B/A Acting class of 2002. This was the start of my love affair with Edinburgh and it hasn't ever really ended.
Everything changed in Edinburgh, as I think it does for most people between the ages of 18-21. I became the person I am, I grew up. My time at drama school, in the end, didn't give me a career (disclaimer: I was probably a bit crap) What it gave me instead was not only a million life lessons I would not have otherwise learned but also a friendship group that would become a family. Flatmates that ended up being like sisters (warts and all!) and as a whole a group that I will care about and continue to spend time with until forever. Two of us even got married and had children together!!! To summarise, those three years shaped who I am and gave me the time of my life, even if I didn't always know it. It's the reason I can't go back without crying when I see that familiar, unbelievable skyline and architecture to make you drool. It's the reason we chose to get married there in 2005. It's my spiritual home and it's the reason my soul is undeniably Scottish.
So all that being said, it stands to reason that I have wanted to get Elin up there pretty much ever since she was born. Until now it just never seemed do-able. The travelling put us off, the five hour drive not especially attractive when dealing with a dystonic Elin and then there's the getting about. City breaks are a risk because it literally depends on Elin's dystonia whether the break is amazing or really stressful. This year, something forced our hand. Caitlin has just completed her second year B/A Acting at Italia Conti and the year group were taking two shows to the Fringe. How could we not go and see her? It was meant to be.  We decided it was opportunity not to miss and we booked and held our breath.
I CANNOT explain to you without sounding like a lunatic what it meant to me to finally get Elin on Scottish soil. As if that wasn't emotional enough, I had Caitlin performing in the Fringe 18 years after I performed there with my own year group. Everything just felt like a beautiful, delicious full circle and it was amazing. More than that, Elin sat. Yes, read that again. She sat. In. Her. Chair. For HOURS. All the way up in the car (five hours and only one wee stop-which for me was an utter miracle- but then I did restrict my fluid intake from 7pm the night before!!)
Then, she sat around Edinburgh for two days solid. Now it wouldn't be Elin if this had been a 100% successful sitting rate, so on Wednesday she did strive to remind us who was boss- how sad! But travelling home again today she was perfect. I can only conclude the magic of my magical, wonderful city rubbed off on her! It truly was fantastic.
Edinburgh was absolutely buzzing. Especially the Royal Mile, where we were staying. It was jam packed with the most amazing street entertainers/theatre and Elin just loved it!! On a different day this would have bothered her immensely but not this week. She absolutely lapped it up, especially anything musical. When Caitlin's group did some street theatre to promote their play, she thought she had died and gone to heaven!
Caitlin's show was excellent as we couldn't have been prouder. This is a photo of Elin outside the venue they performed in (she couldn't see the show as it wasn't suitable but I don't think she minded because she got loads of 'Caitlin time' regardless)
 Taking a flyer from Caitlin-in-costume on the mile!!!
Part of why this holiday felt special was that it was a big moment for Caitlin (first public/fringe performance), Elin (first time in Scotland) AND us (we finally got to be up there all together. Last time we were in Edinburgh with Caitlin she was about six years old and Elin wasn't even a twinkle in the IVF doctor's test tube).
Cockburn Street- one of my faves. Kookie gifts, vintage clothes, film memorabilia, books, records..gorgeous cafe's, cobbled street, stunning buildings..ahhhhhhhh this is my Edinburgh! To round off the sentimental tourist-bit, we took Elin back to the registry office we got married in 13 years ago. It's now a fringe venue with flyers and dodgy graffiti over the door- but show me a place in Edinburgh that isn't during the festival. 
You will notice our raincoats. This is because it's Edinburgh and when in the past you've walked out of a bar in open toe heels to a foot of snow (and zero chance of a taxi) that wasn't there when you went in, you come to expect the first heatwave since 1976 will not necessarily have penetrated the Scottish border. So you pack raincoats....and you need them. 
Elin does not care about the rain!!! It didn't last long anyway :-)
Another of the great, awe-inspiring marvels of the Festival is the amount of events on for children. SO much to see and do. It was wonderful to get Elin to her first Fringe show "Bubble show: Milkshake and the Bubble Flower". If there's one thing Elin loves, its bubbles..and there were lots of BIG bubbles in this! 
It was a kind of mime/circus show crossed with..well..giant bubbles, lights and music!! Of course, she loved it and so did we :-) Paul and I also got to a couple of shows as we took it in turns to put Elin to bed in the hotel- Paul's favourite was a musical he saw with Caitlin about Henry V111'S wives called "Six"- bonkers but amazing apparently!! My favourite was a one-woman show about a relationship break up I saw with my Scottish pal Nicola- also bonkers but amazing!! Pretty much describes the Festival in general really!! I love it. 
So that just leaves us with the meeting of Elin and the other children from the class of 2002, at least those that are still in Edinburgh and not away on holiday this week anyway! (You guys we SORELY missed) My Uni friends were absolutely amazing in organising a suitable venue and taking time out of their lives to come and see us. For a couple, it was the first time they had ever met Elin and Caitlin and so more emotional moments ensued!! This is when I had a true understanding of the relationships we forged together all those years ago. I was so, so touched by the gathering and it was all because of Elin. Because they get it, what it meant to us to get Elin to the city and what it will always mean. It seems incredulous to me that one second you're falling out of a bar at 2am into a snowy street and clinging to each other as you whimper your frozen way home...and before you blink you are introducing your children to one another. Not everyone is this lucky I realise, not everyone will have this from their Uni days. I have it and I treasure it and am so grateful for it. If I could use the word "blessed" without vomiting I truly would. 
I think that pretty much concludes my Summer 2018 holiday blog post. I honestly didn't have big expectations of our Edinburgh visit in terms of it being a holiday, I didn't know how a city break would suit Elin and I thought it might be a bit stressful. As it was, it far exceeded my expectations (if that wasn't clear by now!). Now my very best memories of Edinburgh aren't just from the past,  because this week we got to make some new ones. Brilliant.
"We didn't realise we were making memories. We just knew we were having fun"
                                                                                                    Winnie The Pooh.
Have a great weekend, folks. Thanks as always for reading.





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Sunday, 22 July 2018

A Perfect 10

I've been thinking long and hard about what to write for Elin's 10th birthday on the blog. It's such a milestone, a full decade, entering into double figures- I've been really stuck for a way I could accurately pay tribute to what it means to us to be safely here. For the first time since I started the blog I don't think I can find a way to describe how I feel. The emotions are too great and too complex and my writing could never do the occasion justice. I will have to keep it simple, then.
We are so, so happy.
The girl who didn't breathe by herself for 10 long days after birth is 10 years old. What more is there to say? As a weird twist of fate, as I was shopping for last minute party bits in the supermarket on Friday, I bumped into the Consultant who had been on duty the day Elin was born. He asked how she was and I was absolutely over the moon to tell him I was buying things for her 10th birthday party this weekend. "Wow" he said. 
Wow.
That's a perfect choice of word to describe my perfect girl. Elin was the best we've ever seen her on her birthday this weekend. Happy and relaxed and even sitting in her chair for ages outside!! First time ever she has sat in a chair at her party!!! It was the biggest and best yet, with about 60 people including 15 kids squashed into the cottage garden (plus the field next-door which the farmer down the road very kindly let us 'borrow')!!! Also, following 12 hours of torrential downpour on Friday, Saturday didn't have a drop of rain. The sun always shines for Elin. 
The cherry on top of the cake was that this year, we have asked for donations to Wrexham Special Care Baby Unit (Cherish) in place of gifts for Elin (she has so much of what she needs already and we wanted to make a gesture of thanks to the place that saved her life 10 years ago today) . So far our friends, family and acquaintances have between them given Elin over £1,000 to donate to SCBU!!! As the consultant said in the supermarket..WOW.  I can't believe the generosity and we are absolutely humbled by it. The love and support Elin has, even from those who hardly know her, is just incredible. I sometimes think in certain situations I wonder what Elin would say if she could. If she could, in this instance, she would definitely say thank you. Thank you all for the care, love, support and unending kindness.
I was worried I would find this weekend emotional, but aside from the odd tiny wobble it's just been absolutely wonderful. A perfect 10. Just like Elin.
Elin did get SOME presents, I hasten to add...(as if you hadn't guessed)
Favourite moment of party: Bouncy Castle fun!!!!
Favourite present: Wireless, light up headphones that play music of our choice to her :-)
So that's the end of another party, another birthday and the start of a new chapter for Elin as she enters double digits. Thanks to all for your cards, your gifts, your donations, your well wishes, your kind comments and your thoughtfulness. Thanks for continuing to follow this blog and continuing to take such an interest in our miracle girl. We can't wait to see what the next 10 years holds! Happy Birthday, Elin.
"The only time you should ever look back, is to see how far you've come"
xxxxx


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Friday, 13 July 2018

A dedication.

Q. When is a 1:1 support worker not just a 1:1 support worker?
A. When she is a Lyn.
Next week Elin's support worker at school, Lyn, is retiring. She has been by Elin's side every single school day from 2012, following an awesome grounding by previous support workers Laura and Louisa and has been way more to Elin than 'just' a 1:1 support.  She has been her second Mummy. I can't imagine Elin going back to school in September without her, or rather I can, but I don't really want to because it just makes me cry. We know the rest of the staff at school are fantastic, there is not one person there who I wouldn't gladly hand Elin over to each morning, so Elin is still going to receive the very best care possible and will continue to thrive and have the most fun ever :-) But wow, are we going to miss Lyn.
If you are reading this and you have children in mainstream school you will think I'm nuts. It's just so impossible to fully articulate what having a good support worker for your child with special needs can mean. Along with the head, senior leaders and class teacher, a dedicated 1:1 support who really knows what they are doing can literally create an entirely different life for your child. This is what has happened for Elin in the years since she started school. Maybe my constant praise of the school might seem over the top if you haven't been in my position. It's just a school after all! Except it isn't. It's Elin's second home, it's the only place she goes to without us. She cannot tell us what kind of a day she's had or what she has done. The trust you have to put into the staff and school as a whole is immeasurable. I can't tell you how hard it would have been when she first started, had we not quickly realised just how good the school actually was. A school, though, is just bricks and mortar after all, it's the staff that make a school a home. It was the staff that impressed us most back then, in Elin's first few weeks of school- unwavering support, dedication, commitment and an unparalleled amount of knowledge about children with PMLD. Elin was, and has always been, in safer hands than we could ever have hoped for. So when you have a child with profound and complex needs like Elin it very quickly becomes really hard to see staff as 'just' a head teacher or 'just' class teachers or 'just' support workers, especially with Elin staying in the one class for her whole school career. Actually, they become like a family.
We have always had a combination of amazing staff at Elin's school and I've blogged about it more than once before. This particular post though, is dedicated to Lyn, who has been Elin's constant for six full years now- almost her whole time at school. She has been her rock, her support, her encouragement, her challenger, her carer, her nurse, her physiotherapist, her entertainer, her educator, her second Mum and most of all, her best friend.
It's impossible to give a proper thank you to someone who has cared for your child in your absence like you would. As I've said, obviously the trust involved in handing over your non-verbal, profoundly disabled, tube fed, medically precarious child to someone else for six hours a day is enormous and terrifying. Also, if you get the wrong relationship everything for both the family and the school can be very difficult. We are indebted to Elin's head teacher back in 2012 for pairing Lyn with our girl. It was a match made in heaven. From the word go Elin loved Lyn with all her heart and I think the feeling was mutual. Most importantly, Lyn, in addition to the love and the cuddles and the fun, has also has consistently refused to sit back and accept mediocrity where Elin's learning was concerned. She has pushed her way more than I would have thought possible, knowing what Elin was capable of. This has led Elin to achieve, over the years, the many targets set for her by her teacher and has made all of us prouder than we ever could have imagined. Lyn just has never, ever given up on her and believe me Elin can be really hard work-especially in the older, horrendously dystonic days. The girl we have now is completely and utterly different to the girl who first went to school aged two. She has improved in herself and is now doing things beyond what we ever could have wished for. A large chunk of this is down to Lyn. I can never thank her enough. But I'll try.
Thank you Lyn.
Thank you for being you. Thank you for your sense of humour, so matched with Elin's (and ours!) Thank you for being there, for constantly going the extra mile, for being so instinctively good at your job and thank you for saying (and meaning!) that you don't want or need thanks for doing your best for Elin. I hope you realise how you have improved her life. Thank you for being Elin's voice, her eyes and her hands and her safety net for the last six years. Thank you for the dignity you have always granted her and for being her ultimate champion and protector. I hope you know what you have given her and what you have done for her.
I hope you know what you have done for me.
As a massive bonus, you also became Elin's bus escort this past couple of years and this was a true blessing. She literally went from our arms to yours and back again. What a lucky girl she has been. What a lucky Mummy I have been.
I hope you enjoy the retirement you so deserve and I know this isn't the end of the story for you and our girl!
Thank you Lyn- my words will never be enough.
Elin and Lyn- Best friends forever :-)


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Friday, 29 June 2018

Girls just wanna have sun...

Where else in the world, other than Llandudno, would you get photo-bombed by a seagull?
Nowhere!!! We took total advantage of this Friday's INSET day to escape to the seaside. We had absolutely no idea how Elin would be, especially given how she was last time we went to the seaside (see previous!). However, this time was a totally different kettle of fish. Goes to show how things can be so devastatingly different for no palpable reason in Elin's life. For whatever the cause, Elin was 100% happy to be out for the day and equally to be in her chair. This meant we had as near a perfect day at the seaside as you could wish for. 
With Elin, you kind of know within about five minutes of her opening her eyes whether she's going to have a good sitting day or not. Today, all the signs were good but we still weren't sure- it's a fair drive to the coast after all. Today, that didn't phase her one bit. It was smiles galore and we couldn't have been more happy or relieved.
As we rolled down the prom, we came across several children just like Elin, all in chairs and all clearly with smilier conditions to her. What's amazing is, without hesitation all the chairs stopped together to talk to us. It turns out they were a local school on a trip. They didn't pass by with a smile, they stopped. We didn't know them at all, yet we knew them inside out. We exchanged names and chats with all the children and there was even another little girl with the middle name 'Haf' !! The school staff were so lovely and clearly dedicated, it reminded us of Elin's school. This is sometimes what I absolutely love about being out and about with Elin, you find like-minded folk and it's like you're all part of a special club. Elin grinned widely at the children from the school and there was an unspoken agreement amongst the adults and carers that we were amongst the company of some really special and amazing kids. It's a camaraderie. I knew then that today would be a good day. It really was.


Elin loved the pier. She got some cool new red glasses and I got to obsess about what would happen if the pier randomly collapsed while we walking over it (I will never get over this fear when walking on a pier, but it's under control I promise). It really is hard to beat North Wales in the sunshine, it's just that North Wales is so rarely sunny that this is particularly easy to forget. But of course, the minute the sun comes out the long winter days are forgotten. Especially when Elin is doing good sitting. 
"On a clear day, you can see forever" said The Queen (and by that I mean Shirley Bassey)
I swallowed my deep rooted fear of the pier and afterwards we went for lunch, predictably but reliably, to the St George's Hotel. Paul nearly made the mistake of getting Elin out of her chair but we have learned that whilst she is happy, that's exactly where you should leave her. The staff were lovely and did their upmost to accommodate Elin, who clearly thought she was pretty special :-)
Following lunch, where I went to the ladies for probably less than two minutes total and Paul managed to order me the wrong sandwich in my absence (seriously, I have prawn practically everywhere we go but Paul decided I'd said Salmon- something I haven't eaten ermmm..since...EVER because I HATE IT!!) when it arrived and I explained politely it wasn't what I'd asked for to which the waiter replied 'Well, it's what your husband asked for' I couldn't believe it! I bit my tongue against the knee jerk classic 'I only gave you one job!!" and luckily the lovely waiter saw the funny side and to save a fellow male in distress brought be the correct order in no time while Paul looked sheepish and I looked hungry. "They're both pink fish" Paul reasoned. I reasoned that he better leave the waiter an extra large trip and give me the lion's share of the chips. Tidy.
After lunch we took a VERY long stroll down the promenade. We were on an absolute high that Elin was sitting so nicely and enjoying herself so much. I don't think she stopped smiling all day. It felt amazing to walk along without any stress or seeing Elin in distress. Eventually we got to the 1950's Butlins-style paddling pool, which had a definite charm since it's refurbishment and which was still relatively quiet given he local children were still in school. We had a sunbathe by the side and then of course Elin needed to get her feet dipped in! Just heavenly in the heat and we actually ended up staying there much longer than we had anticipated. This was the first time we had got her out of her chair all day. Unheard of!
Not long after this and after being unable to find a Mr Whippy in the vicinity we decided to cut our losses and go home whilst the going was good. Elin had literally spent hours in her chair and regular blog readers will know what this meant to us. We were so happy. She even continued the good spell all the way home.
Today was the chalk to the cheese of the last time we went to the beach.  I think it served to reiterate to me what I have always known since Elin came into our lives- that is, you can never expect two days to be the same and as bad as one day is, another will be as wonderful in equal measure. The bad days will make you appreciate the good days all the more. The shadow, as ever, is just a part of the light.
Have a good weekend folks, tonight we are hitting the hay grateful that the capacity for great days is still as within our reach as it ever was, grateful for the smiles, the health and the happiness of our girl.  We can't really ask for more than that, can we?
Ruth xxx
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