Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

Friday, 18 May 2018

Drakes in the Lakes!


To go to the Lake District on holiday and not have to wear your cagoule at least once feels like a bit of an exciting rarity. To go to the Lake District and actually experience such good weather that you’re tempted to get your legs out feels like an absolute miracle!! Welcome to our miracle holiday, for our miracle girl, where sunbathing replaced sheltering from rain showers and everything felt just that little bit wonderful. 
This was our home for the week at the amazing ‘North Lake Lodges’ in Aspatria, Cumbria. Totally private, totally accessible and totally somewhere I could pretend I was a rich Californian with a beach house holiday home! We loved it here. This was a holiday we really needed and we could not have been more lucky with the location or the weather. Definitely time to relax. 
Aspatria actually sounds like somewhere in Italy rather than somewhere ten minutes from Cockermouth! Which was fitting since we could *almost* believe we were abroad the whole week, if we squinted a bit and ignored the very British breeze! Oh- did I mention the hot tub? Yes we had a hot tub. Not just any old hot tub either, one that was undercover with twinkly lights at night time and a plasma TV mounted on the wall. It looked like the Starship Enterprise. I know it’s not the 1980’s and I know it’s not Dallas and hot tubs have probably had their day but I LOVE A HOT TUB!! Haha! One I can watch Netflix in too? Erm.. yes please! But the best thing about it was how much Elin loved it too. She went in it loads and it was amazing to have the room in there for her to have a proper stretch out.
Not being familiar with the area at all we sort of flew by the seat of our pants in deciding where to go and what to do, a friendly local recommended the harbour Maryport on our first full day so we happily followed his advice and weren’t disappointed, it was a lovely little place with beautiful views and even an aquarium for Elin to look around! 
Ok admittedly the aquarium was a bit tired-it was no ‘Sealife Centre’ and actually I think the fish shop in the Grosvenor Garden Centre has a bit more to it! But Elin didn’t care that it looked like someone had stored some tanks of fish in their shed and she did get to stroke a Sting Ray and see some neon pink Jellyfish. In fairness they didn’t charge Paul and I, saying they would put us down as carers which was lovely, plus there was a cafe so really what more can you ask? 
I do love a harbour and this one was particularly beautiful I thought. I could have stayed there all day staring at the boats bobbing up and down. I think Elin really liked the different sounds and smells of being close to the ocean too. 
Did I mention it was so clear we could see Scotland?!???? Wow (Yes Elin is wearing Dinosaur pants because she is progressive/doesn't conform to gender stereotypes and Disnosaur's can be for girls too, ok?!? Ummm plus we just really love how pretty brightly coloured Dinosaur's look hahaha) 
On our second full day we took things easy and went for a look around Cockermouth. We found the house where Wordsworth lived, and more importantly than that a gorgeous coffee shop. Wordsworth’s house wasn’t accessible, but I’ll forgive the architects of 1770 for not having the foresight to stick a few ramps and wide doors in when they built it. Elin wasn’t bothered anyway, she’s more of a Dylan Thomas fan to be honest. It was worth a look though, especially the gardens.

The better-than-Wordsworths-house coffee shop. Show me an Americano in the sun and I’ll show you one happy Mummy!
So... maybe you’re wondering about Elin’s dystonia? Well I think the reason why we loved this holiday so much wasn’t just the weather, it was the fact that largely Elin’s dystonia stayed away. This, of course, was amazing given the weeks we’ve had recently. We think it’s to do with the addition of a full length back cushion in her chair, which helps to break her muscle tone patterns. It wasn’t fool proof but was particularly effective when travelling in the car, which made everything so much easier, especially the three hour journey to get to Aspatria. Just brilliant. 
I don’t know about you but when I think of the Lake District this is really what I imagine. This is Keswick, where we haven’t been before and where we would definitely go again. It was stunning.
We even got to take Elin on a 50 minute boat ride across Derwent lake which she LOVED and so did we. Talk about peaceful. I could have sat on it all day!

Elin was so happy here, I think the fact that it was term time really helped as it was relatively quiet. Bliss. 
You can see the boat we went on in the background of the below photo. I love this photo- it looks like it has a filter on but it really doesn't, the light was just so so beautiful. Amazing.
Elin REALLY loves the ducks and geese and all their funny noises! She did great listening. 
The really good thing, we realised, about being in an open plan lodge was that Elin could be with us even when we needed to be in the Kitchen. This is something we will definitely be considering when looking at moving house! So lovely. 
Elin’s (very apt) suitcase is nearly as big as her! This was taken just before we left and Elin was definitely the only one smiling! There’s nothing worse than leaving a lovely holiday! But we will absolutely be holding onto this one for a long time, a rest, re-charge and relax and proof that a change of scenery really can give you a different perspective. Things had started to feel a bit heavy for various reasons lately, but it seems there’s very little a (fairly) dystonia- free week in the sun won’t fix. 
As if all that wasn’t quite enough, Elin sat so beautifully on the way home that we managed to call in on her brand new baby niece. Meet Miss Agnes Beatrice Wendy Drake (sister to Gruff with whom you’ll be familiar if you are a regular blog reader!) Cracking end to a cracking week.

Thank you for your continued interest in our miracle girl.
Hope you had a good week too, folks.
Xxx





























SHARE:

Tuesday, 8 May 2018

Hurricane Dystonia

The calm before the 'storm'..........

Every so often, Elin's dystonia will really get me down. Most of the time you just manage it as best you can and take the good times as and when they come. Sometimes, though,  it's impossible not to get a bit overwhelmed by the situation. Usually this happens after a really good spell, so you are reminded of how much easier life is when Elin's dystonia isn't bothering her and she will just sit happily in a chair. It doesn't feel like a lot to ask and yet the simple fact that Elin can quite often find it impossible to sit in her wheelchair has made, and continues to make, life really agonisingly difficult sometimes.
It's not the disability, ironically. Aside from the lifting, you can get really used to life when someone in your family has wheels where their feet should be. We have hoists, we have an adapted car, most places we would want to visit these days are disability-friendly. But show me a dystonic girl and your world can suddenly feel very small, since there is a Catch 22 of a 9 year old child who can't walk but can't sit in a wheelchair either.
It's heartbreaking for Elin, she loves to be out and about and nosey and sociable - when she is dystonia free. But if it has hold of her doing almost anything/going anywhere is either a huge mission or just impossible, especially now she is so big. She needs to be lifted in and out of her chair every five minutes. It's hard.
I get asked a lot what dystonia does to Elin when I'm trying to explain it. I think until you see it, it's hard to imagine. Elin will start by pushing down through her feet onto her chair footplate. Her head will start whipping from side to side. Her arms will fling out, repeatedly. Then the all-over body shaking, red face and gasping for breath will start. It looks pretty much like a full on epileptic seizure . Absolutely awful to see and god only knows how it feels for poor Elin. I would upload a video but that would feel like an invasion of Elin's privacy and besides you probably wouldn't want to see it. Needless to say when it takes hold there's no stopping it until you take her out of the chair, at which point thankfully she will relax. It's just that taking her out of her chair is no longer as easy as it once was- my bad back is testament to that. However the worst part has to be the car journeys.
Travelling anywhere when Elin is in the grip of dystonia becomes traumatic, stressful and upsetting. This weekend we were blessed with rare bank holiday sunshine and we decided to go the beach (given that we can never go far we are incredibly lucky to live an hour from the North Wales coast- it's so stunning) Elin's dystonia had actually been amazing all week, following a few awful weeks, so we thought we were winning. She was great on the way there, I couldn't wait to get her out and go for a gorgeous roll along the seafront. But for whatever reason (and there is no reason, or pattern, as far as any of us can tell) she just stopped being able to sit shortly before we arrived. Thoughts of walks were abandoned as we had to stop every few seconds to re-position Elin and make sure she wasn't damaging herself. In the end I found a bench where I could lift her out and Paul went back for the car to drive the rest of the length of the prom to get to the beach.  We parked her chair as close to the beach as we could then carried her down and quickly got her onto a picnic blanket, which thankfully she was able to relax and enjoy before eventually having to concede to the dreaded and traumatic journey home. I sit next to Elin's wheelchair in the back of the car now so I can attempt to comfort her. Nothing much works apart from bending her forward, so she's leaning right over her own knees, with my arm stretched around her back as I try and twist sideways to do so from my seat belted position. Not fun.
In June we finally have a meeting with the UK's leading expert on dystonia, Dr Lin at the Evalina Children's Hospital in London. It is a great irony that we have to travel for hours to get some advice, when travelling for hours is the one thing Elin can't do, but we really feel we need an opinion from someone who may have seen it in this particular form before. Keep your fingers crossed for us!
I share this post with tags in the hope it will reach someone else on the wonderful world wide web who is going through this. Most of the dystonia I have come across so far has not taken this form of being triggered by seating or standing frames (and yes we have tried every seat and wheelchair under the sun). If you're reading this and it sounds familiar please get in touch, I feel your pain!
In the meantime until we find a cure, if there even is one, we just have to continue to 'manage', which now unfortunately has started to mean thinking very carefully about where we are able to go and what we are able to do as a family more than ever following her growth spurt. I find myself struggling to say I wish Elin wasn't disabled because it feels like a betrayal of who she is, it feels like saying I want her to be someone else somehow, that she's not good enough- and that feels wrong. But I do wish with all my heart that she didn't have dystonia, right now I'd give my right arm to be able to go on a simple day out without it turning into a nightmare of epic proportion and without the three of us ending up exhausted and upset. It would be awesome to go for a walk without having to get a babysitter, to just do some really mundane ordinary stuff as a family together. It's like being hit by a Tornado, you have no idea it's coming you just have to hope for the best, wait for it to pass and deal with the results in it's wake. Probably no coincidence that bad attacks of dystonia are known as 'Dystonic Storms'. To go for a stroll on a bank holiday Monday instead of being house -bound (thank god for the garden) would be amazing. It doesn't feel like a lot to ask really, given what Elin deals with every single day with a smile on her face. She just deserves better. I hope the great and powerful Wizard Dr Lin can help and our trip in June isn't wasted! Because getting out and about and taking Elin to lovely places along with the rest of the world on a sunny bank holiday is something which I, in the words of Dorothy Gale, think I miss most of all.
On the plus side I must be developing arm muscle tone to rival Venus and Serena- no need for a gym membership when you have a dystonic nine year old! Every cloud. 
Have a lovely week, folks.
xxxxx



SHARE:

Tuesday, 17 April 2018

No place like home?

Recently I was asked to write a review of the disabled facilities at Chester's 'Storyhouse' for the fab website 'Euan's Guide'. Euan's Guide is the leading disabled access review website in the U.K. It is an award-winning sight built by disabled people for disabled people and is also a registered charity.
 Euan's Guide aims to inspire people with limited mobility to try new places. The website was founded in 2013 by Euan and Kiki Macdonald, after Euan became a power chair user following a diagnosis of Motor Neurone Disease. Since Euan's Guide uses reviews from members of the public who have actually visited venues around the UK, it means wheelchair users can get an honest cross section of opinion about the accessibility of venues, rather than just what the 'official' websites for said venues state.
It can be frustrating and time consuming to rely on trial and error when choosing where to visit if you have a disabled person in your party. There is quite a distinct lack of information in general on the web regarding places with appropriate disabled access. Also, what works for manual wheelchairs may not always work for power chairs or mobility scooters and many web pages citing disabled access at their venue don't make detailed enough distinctions.
That's another reason why Euan's Guide is so handy, each review clearly states who was visiting and what their specific needs were at the time. As we are going to Edinburgh in the Summer, I will definitely be trawling Euan's Guide to see the recommendations for families in our situation. Euan's Guide states that is aims to remove 'the fear of the unknown' for disabled people visiting a venue for the first time and I think it has definitely achieved this aim with a wonderful vision by Euan and Kiki. It's not until you stumble across something so useful that you wonder why on earth you never googled it before!
Finally, the reviews on Euan's Guide are concise, honest, friendly and empowering. I would encourage anyone in our position to take a look and more importantly to add your own reviews to Euan's Guide, from coffee shops to museums, hotels, shops and everything in between. Sharing your experience might just give someone an invaluable helping hand in deciding where to spend their down-time in the best place available, wherever they are.
Reviews for Euan's Guide are super-easy to write and upload. The link below is my first review for Euan's Guide, of Storyhouse in Chester. Regular blog readers will be unsurprised that I highly recommend a visit! It is my own home away from home and the first place I found that I not only love in it's own right, but a place I can share with Elin too whenever we want to just hang out somewhere as a family. Not all outings have to be about a big mission or a big day out. Sometimes we want to just go and have coffee in a home away from home- somewhere where there is a supportive and accessible environment to simply watch the world go by in. Thank you Storyhouse for providing that for us. Thank you Euan's Guide for enabling us to share it :-)
https://www.euansguide.com/venues/storyhouse-chester-8263/reviews/their-house-is-everyones-house-7271



xxxxx
SHARE:

Monday, 2 April 2018

Happy Easter!

 
Happy Easter everyone!
Elin has had a lovely first week off school. She’s been shopping and for a walk by the river. She’s seen family and friends and had a super productive physio session. We can really see that she is making small improvements toward working on her head control and balance now. It feels great to see even more progress by her lately, we are so proud! 
There has been good sitting and not so good sitting. But mainly good!
She has even managed cuddles with her favourite person! Caitlin is home for one week only from Drama College, since she has been asked to assist the current third year group with their dissertations, so she has to be back in London for the majority of the Easter break to rehearse. Their dissertations involve writing ,directing and producing a show from scratch which they then ask a handful of students from the first and second year to perform in. This time next year Caitlin will be preparing to graduate and it will be her putting together her own show! Eeeek! She has come home with yet another amazing termly report and the whole family is so proud of what she is achieving. She is working so hard. I think Elin just  wishesLondon was a little closer! 
 
Finally Elin had a fantastic session at The Movement Centre with the final fitting for her new standing frame, which we will be using in conjunction with a basic physio programme to gradually encourage and hopefully improve head control. It was a stress free appointment as there was no Dystonia in sight and Elin looked great in her frame. She has had some new boots and callipers which also work really well for her and promote a better foot position when standing than her current splints and boots. So it’s all looking good, now the hard work starts with daily standing frame sessions after school each day. On Thursday, Elin looked ready for the challenge! 
 
Hope you’ve all had a great Easter weekend despite the STILL appocolyptic weather! Paul and I celebrated our 13th wedding anniversary on Good Friday with a lovely meal out and a red wine list that was a little TOO good, so I was busy feeling the effects of that on Easter Saturday! Oops! But you know what’s good for a hangover? Chocolate eggs 😊 How lucky is that? 
Thanks for reading, have a great week.
Ruth xx
 
SHARE:
Blogger Template Created by pipdig