Living with Cerebral Palsy 🍋🍋

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.
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 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


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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