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

So what do you do?

Ugh. When you meet new people. Or old people, who know you've stopped work. I hate this question. It makes me feel inadequate- RIDICULOUS I know. But I struggle to say 'I don't work' since I finished teaching. I feel like this says something about my identity as a person, even though I'm certain it doesn't to those asking the question. However, fresh on the back of my 'unemployment paranoia' the other day someone asked me why I didn't work, despite knowing my situation with Elin, and then actually argued with my response as if it had anything to do with them and as if it was their sole mission in life to persuade me to go back to work.
Definitely fodder for a blog post, I thought.
So..........

A perfectly average week in the life of us (this is completely mundane information but multiply this by 52 weeks of the year and you get my drift)

Monday
Meeting 9:30am school w/Nurse.
Meeting 2:00pm w/Elin's Case Manager.
Scheduled phone call 4:00pm catch up and discussion of needs with Occupational Therapy.
Appointment at home 4:30pm Physiotherapy.
Tuesday
*No appointments!*
Drop off prescription at Chemist.
Phone Orthotist to check on boots progress.
Send email to Elin's case manager with links to upcoming equipment needs.
Chase appointment request with school inclusion officer via school.
Wednesday
Email Ed Psyche to confirm meeting at school next week.
Appointment 3:45pm w/new social worker.
Chase G.P as to why Medazolam medication still hasn't arrived.
Email O.T to confirm physio can meet here with her. Remember to phone school to check O.T can go in before this to see Elin at school.
Thursday
Phone incontinence service to check when next delivery of nappies due (as we will run out if I miss the fortnight-before order date).
Pick up and check medications from Chemist.
Post Elin's updated school records to case manager.
Appointment 3:30pm Orthotist intermediate boot fitting.
Friday
Take delivery of Elin's feeds and giving sets for the month.
Drop off another prescription.
Chase G.P referral for specialist Dystonia appointment still waiting to hear about.
Appointment 3:00pm - Pick up Elin from school and take to Hippotherapy.

Night Diary.
Elin wakes up usually around 2am for a change of nappy and sometimes a  change of sheets too.
Back to bed and pray Elin drops off quickly again.
Possible second wake up around 4:30am, may or may not go back to sleep.

Other appointments on other weeks in addition to those above include:
Cranial Osteopathy.
Dietician review.
Paediatric Neurologist @ Maelor.
Hips/Spine reviews @ Alder Hey.
Orthopedic Spinal etc review @Maelor.
Dermatology.
ALAC wheelchair services.
ALAC Orthotics/Splint castings and review.
Specialist Dentist.
Movement centre @ Gobowen/Standing frame fittings.
Hand Splints reviews.
Home hoist and sling checks and reviews.
Occupational Therapy home equipment review.
WAV Vehicle repairs (chair restraints etc)
Bath repairs and review.

Please understand that none of the above is in ANY WAY a complaint. I am delighted that Elin has access to all of the above and forever grateful to all of the professionals in her life for their care and dedication to ensuring her quality of life remains the very best it can be. But I just wanted to share the reasons why I choose to *currently* not add 'work' into this mix, since if I am asked about it I annoyingly find myself struggling to justify my choices articulately. I think I feel guilty. I don't know why. Guilt for not contributing to society in some way? Guilt that I'm fortunate enough to have the option? I don't know.  Then I hate myself afterwards for caring so much what anyone else thinks in the first place. It's taken me a while to realise I don't actually automatically owe people an explanation of why I chose to give up a job that I used to love. This post is definitely not meant as a justification either, but I finally felt ready to honestly and openly share some of the reasons why, as a parent of a child with severe and complex disabilities, going to work doesn't really fit into my schedule at the moment and doesn't for many others. I did it for eight long years following Elin's birth and in the end I couldn't make it work (I made myself ill trying, both physically and mentally). Some people do make it work of course and they are AMAZING. For me right now, the kind of teacher I could be alongside the job of being Elin's Mum is not the kind of teacher I would want to be.  Teaching simply needs more dedication and enthusiasm than I am able to give, especially in the current educational climate (and I could write a whole other blog post on that subject believe me). I loved my job more than anything once upon a time and leaving a school I called home and a staff that were family was beyond difficult even though I knew it was 100% right at the time. It's taken me 18 months to be able to admit "I USED to be a teacher" instead of "I am a teacher" because of some weird misguided sense of shame I carry around about being unemployed. I was 26 years old when I had Elin, I was always going to go back to work full time after having her, I never questioned it. I had a career. I looked sneeringly down from my ivory tower of pregnancy on Mum's who didn't work- I couldn't imagine it (I hate that fact now-maybe that's partly where the guilt comes from). Things change. "Life is what happens whilst we are making other plans" as John Lennon so accurately observed. It will always hurt, always be yet another "Sliding Doors" moment in my lifetime, but I am soooo thankful I have had the ability to make this choice, which works best for us right now.
Perhaps one day things will change again. Learning to live in the moment (as a bona fide control freak and someone who likes to plan)  is something I've been trying to train myself to do for the last ten years. I think I'm slowly starting to manage it.
I used to be a teacher. Now I'm just Elin's Mum.
And I love it.
Thanks, as always, for reading.

Happy Mother's Day to all the Mummy's out there if you work full time, part time or stay at home. You're all heroes. 

xxxxx