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

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