Living with Cerebral Palsy 🍋🍋

Sunday, 19 June 2016

Father's Day

Nothing much I can add! It's been a tough week for Elin as she has had Bronchitis and the evil antibiotics needed have, as usual, upset her tummy and given her impetigo. She hasn't been sleeping too well and until the antibiotics started to kick in she was coughing pretty much continually. Not nice to see :-( Paul has been as always an absolute stalwart in caring for Elin and also for me when Ive been almost too tired to stand up! He never complains and even reading this sentence will leave him incredulous- he refuses to believe he's doing anything special at all. "But I'm her Dad". I think this is what I love most about what he does for us day in, day out. He just cannot see that it is anything special, that I would not be able to cope without him. That lesser Dad's would have folded by now, or at least shown moments of weakness. That he would be totally justified in being mardy when I  leave him *literally* holding the baby to visit friends or go out for a few drinks, but instead of being mardy he selflessly encourages me to go and have fun, to get a break (Maybe this is not a totally selfless act if Liverpool are playing or there is a new Game Of Thrones episode to be devoured, ha!) That he is not interested , as so many are, in a world of social media over-sharing (which I am not judging anyone on by the way -since I do it myself with, for example, this very blog! )  or showing everyone just what a great Dad he is. He doesn't care what the world thinks or whether people 'like' a photo of him and Elin and congratulate him on being so awesome. Because he just doesn't think he is. And that is WHY he is.
Happy Father's Day, folks

Friday, 3 June 2016


As a footnote to my previous post (see below 'Drakation 2016') about our wonderful holiday, the eagle eyed among you may have noticed I mentioned Caitlin's singing competition.
She was performing at the Urdd Eisteddfod, defending her gold medal title from last year. You lovely regular readers might remember she sung a song from Hairspray, blew everyone's socks off and won not only the competition, but a trip to sing at Disneyland Paris. Following that this year was a tall order.
She smashed it.
For the second year on the run she won the entire 'Musical Theatre Soloist' competition, against entrants from across Wales. There were 17 people in the final pre-lim!! Everyone was so incredibly proud of her, it was the prefect end to our perfect week. This was Caitlin's last Urdd Eisteddfod before she goes off to college. She's been competing for 12 years so it was a wonderful high to finish on for her.
This year she sang the Liza Minelli classic from Cabaret 'Maybe This Time'. It's one of my favourites. She definitely did it justice. Here's the link if you'd like to see her winning performance.
Oh and if you don't know the song and you want to know what it's about, here are the English lyrics :-)
Maybe this time, I'll be lucky
Maybe this time, he'll stay
Maybe this time
For the first time
Love won't hurry away

He will hold me fast
I'll be home at last
Not a loser anymore
Like the last time
And the time before

Everybody loves a winner
So nobody loved me;
'Lady Peaceful,' 'Lady Happy,'
That's what I long to be
All the odds are in my favor
Something's bound to begin
It's got to happen, happen sometime
Maybe this time I'll win

Lots of love xxx

Thursday, 2 June 2016

Drakation 2016

Well, we are back from our traditional giant family holiday we refer to as "Drakation". 17 Drakes including partners and children (not all Drakes by name but you get the drift. We're all faaaaaaaahmily *said in best  Peggy Mitchell voice*), 1 massive house, 9 bedrooms, 6 bathrooms, 3 gardens, 5 days of blazing sunshine and a partridge in a pear tree later...and did we have a good time?


We had a GREAT time. Simply the best yet.

This was our home for the week- Penty Parc in Havorfordwest, Pembrokeshire. Or as we called it, Draketon Abbey.
Yep, this was ALL OURS. I would highly recommend this place for large families, the owner was lovely and it was beyond reasonable for the week when you have 10 adults or more. We literally felt like royalty (well, I did!) and no chance of accidentally pinching anyone's dressing gown and room key (ha!).  There was no lift, so Elin needed to be carried up the vast staircase to bed -I promise I did not pretend to be Scarlett O'Hara every time I descended. (That may or may not be true. Ahem.) But  we found this completely manageable especially with all the help on hand. Do you want a peek inside?
The pictures don't really do it justice. It was simply incredible. The kitchen even had a massive aga range and there were servants stairs at the back of the utility room (itself bigger than our front room at home). Added to this were 8 acres worth of three beautifully kept floral gardens, including a delightful 'secret' garden behind a wall, and a lake. Only thing missing was a dripping wet Mr Darcy/Colin Firth emerging from said lake in a clingy shirt, but hey-ho, you can't have everything.  I know you don't read this blog to hear about a house, but I can't stress enough to like minded folks with large families to try it out if there is enough of you. You won't be disappointed.
But what about the star of the show? I hear you cry. Never mind Manderley, what about Elin???
She was AMAZING.
She had a rather grumpy week leading up to our holiday so I was a little nervous before we left. She was a little bit whingy on the way down and when we got there. Luckily her little buddy Gruff was on hand to try and cheer her up by kindly bringing her Gordon, his Thomas The Tank engine toy. I mean who wouldn't be cheered up by that!!! Too cute.

From that moment on I think Elin decided Drakation might be ok. And with Caitlin, Connor, Arthur, Tabitha and baby Ivy also present to amuse her with their youthful energy and shenanigans she really had no choice but to be happy. So she was. ALL HOLIDAY. 
We felt so lucky that she was happy and well. Added to the amazing setting and the incredible wall-to-wall sunshine, we really did have all the ingredients for a fabulous, relaxing time. It also helped that there were several Masterchef standard cooks in the party and so family tea time was delicious every evening (obviously, I'm not including myself in that. You know I don't cook. I did go for the chippy tea on the first night though- that's the same thing, right? ) Eating al fresco it really was hard to believe we weren't in a chateau in the South of France or somewhere equally idyllic. We felt very blessed indeed.

So then to the day trips. As Caitlin is competing in the Urdd Eisteddfod today to defend her gold medal from last year in the musical theatre solo (eeeeek!), we left a little early- the rest of the Drakes are still there (sob!) We also hardly ever take Elin anywhere for more than a few days as we never know how she is going to be- we try not to count our chickens. You sometimes have to walk away whilst the going is good! Anyway despite this we still managed to get two fab day-trips in, one to Tenby beach and one to Laugharne where Dylan Thomas, one of my literary heroes, lived. I have ALWAYS wanted to go there, I wasn't disappointed!!! It was stunning. I fell in love with Pembrokeshire this holiday, we will definitely be back.  Here are a few of my favourite photo's from the trip...

It's a bit hot here! That must be why Caitlin needed a beer- to cool down! :-) 
Loving life

Anyone trying to get out and about for the night with a disabled child (or any child really!) highly recommend the Aero-bed which plugs in and inflates in minutes to a full sized single bed. VERY handy for our travels.
Elin and I chilling out with gorgeous peach-face baby Ivy in the beautiful grounds. 
Elin and Tabitha in the 'Princess Room' (Tabitha's words) which was so posh we daren't go in there to lounge around as a family but it lent itself VERY well to me, Elin and Tabitha dancing around grandly pretending to be Belle from 'Beauty and the Beast'. Girly heaven.

The day before we went to Tenby beach we visited another beach named Newgale and it was late afternoon so it was a little windy. Not that Elin seemed to mind. I cannot fathom how much of an assault on her senses the beach environment must be and yet she seems to love it. Clever, fearless girl.

Here are a couple of snaps from the day trip to Laugharne. I have loved Dylan Thomas for a very long time not least because I was 'First Voice' in a production of 'Under Milkwood'  at Drama School. It not only gave me a renewed respect for the text but it also helped me to quash my homesickness in being in Scotland- that Welsh lilt I had missed so much was suddenly all around. The definitive performance of 'First Voice' is of course Richard Burton and I probably turned in an extremely pale imitation of this performance in my interpretation but nevertheless I loved it and it has had and always will have a very special place in my heart as a play. I actually think it's genius . Going to see the writing shed where 'Under Milkwood' was written was definitely one to cross off my bucket list and it would never have been the same going without Elin. 

This is Laugharne Castle

The actual place Dylan wrote. BLISS.
The cafe at Dylan's boathouse, where he lived. Now home to a museum and a gift shop where I bought a book by his wife Caitlin (who Elin's very own big sis Caitlin is actually named after don't you know)  which I'm looking forward to devouring in what is left of half term. Wow how I love to read when I have time!! Heavenly. Oh  and Elin REALLY liked the cafe.
Back at the ranch, Tabitha and Elin have another little play together. Elin absolutely thrives on the sound of other children, it melts my heart to see how much she enjoys it. Maybe a little brother or sister would be a good idea for her -oh excuse me, Paul has just fainted in horror I'll be back any minute to finish my post.......... ha :-) 
Right, whilst Paul inhales his smelling salts- I forgot about this pic. This was taken in Tenby, which was busier in half term than St Peters Square in Rome on Easter Sunday without the added bonus of getting a glimpse of someone famous, ya know, like the Pope (seriously. I've done both. It actually was busier) . Elin didn't mind and even found sitting in her chair quite funny. She especially enjoyed a quick visit to the pub for a swift half. She's a rum one that Elin Drake! 
 Penultimately, here is a photo of our branch of the ever growing Drake dynasty (sorry for the branch pun but it's tres appropriate since we're standing by what is basically the Faraway Tree) in the gardens of the house.
The irony that this may be the last 'proper' family holiday before Caitlin is sucked into the world of student living, and generally residing in far too thick a fog of alternate hangover and long days of acting training to want to attend a family holiday ever again, is not lost on us. Though, of course, she insists nothing will change- but didn't we all once upon a time? We can only hope that it won't and that she will be back next year. Here's to you Drakation 2017, goodness knows what you will bring but hopefully whatever it is, we'll all be happy, healthy and together. There really isn't anything more important in the world than that.
The lovely Drakes. Not the most conventional family in the world maybe, but one that works. 
And that's good enough for us. 

Happy half term, folks. 


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