Living with Cerebral Palsy 🍋🍋

Tuesday, 26 July 2016

24 hour party people :-)


Hi Elin fans! As promised here is a quick update on the big birthday weekend..
Elin had a fab party and there were roughly a million people in our garden enjoying the fun! (This may be a slight exaggeration, but only slight). There was no rain, plenty of sunshine, a bouncy castle, a massive paddling pool that looked more like a water park (thanks Amy!),loads of balloons, an incredible amount of gifts and money for sensory toys, not quite enough food (doh!), too much drink, a beautiful birthday cake and smiles all round. Nobody could quite believe she was 8. It was humbling that so many people came (from all over the country!!) to celebrate with us. It goes to show how much she means to everyone and that is so wonderful for us to see. Elin's birthday isn't just an ordinary party, it's a celebration of a miracle and an acknowledgement of how special it is that the girl who almost didn't live for even eight short minutes has been bringing everyone joy for eight long years. She had a great day and followed it up with a birthday outing to see the BFG at the Cinema (which was fantastic and made me cry twice). Now, I'm off to choose her some new switch/sensory toys with her incredible amount of birthday money (which could frankly keep BHS afloat for another 12 months) Have a great day folks, keep smiling, enjoy the pics of our girl :-)















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Friday, 22 July 2016

Isn't she lovely :-)

The moment we met you we thought we had lost you. But you clung to life and the minutes turned into days and weeks then months and now eight amazing years. Happy Birthday Elin, our miracle girl. We are so very lucky to have you.
 Big party tomorrow. Updates will follow :-) 
xoxo

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Sunday, 10 July 2016

I hate you so much right now...

Some days you just have to dig deep. Today is one of those days. I'm lying here watching Wimbledon, detached completely from it,  with Elin lying on me and I'm digging deep. I got Kelis circling in my brain because her voice in its screaming anger echoes exactly how I feel. Elin is continually writhing and very stiff today, not comfortable in her own skin, not comfortable on me, or anywhere. The dystonia has her little body in its jaws today and isn't letting go and I have to stand by and watch the monster. We tried to take her out before, the guilt of keeping her inside on a weekend predictably eating away at us, but the guilt of taking her out and thus upsetting her dystonia further predictably crushed us in the end anyway . It's a lose-lose situation. It poured down without warning and she thrashed and grunted in her chair whilst we couldn't lift her out because, you know, we were all getting soaked. There were shelters but no seats and how do you stand carrying a chunky eight year old for very long? You don't. Fighting with her chair in and out of the car restraints, fighting against the dystonia rendering her practically impossible to hold. Fighting against the rain, fighting against the urge to scream and the lump in your throat because you just wanted a nice afternoon out of the same four walls. For her. For us. I'm sick of fighting. When trying to do the simplest of things involves a struggle at every turn it drains you. My left hip is screwed from holding her, it constantly aches and clicks and wakes me up and I'm too scared to go the doctors because, really, what am I supposed to do about it? So I fight that too.  I got up seven hours ago and I want to go back to bed. It's exhausting. Maybe the real fight is the emotional, not the physical. It takes me back in time to a place I don't want to visit. You know -the 'why us?' place where reason and happiness go to die. I hate you so much right now, Cerebral Palsy. Dystonia. Fate. Destiny. The Universe. Whatever it is . I hate you. The whole world is planning their Summer hols and we're just hoping Elin gets at least a good few dystonia free days this year to enable us to actually get her out and about without it being massively traumatic for her, and us . If those days also coincide with some sunshine well then we will feel like we've won the lottery. Woo fecking hoo. I wish with every fibre of my being that someone could find a cure for dystonia, since the arching and the writhing and the constant stiffness is what affects Elins  quality of life so badly, never the fact that she is disabled. We are so fortunate to live in a country where being disabled actually hardly stops you doing anything anymore. But the dystonia will, oh god yes. And did I ever think there was a time I would be sat here wishing my daughter was 'only' disabled? That I find myself wishing to God-knows-who yet again that I f we could cure the dystonia I would happily take the disability, honestly I would, I promise guv. What a sad little wish that is.  It makes my heart pound and my stomach twist with the unfairness of it, the frustration. So I'm digging deep, like I've taught myself how, and I'm riding it out and biting my lip and trying to care enough to root for Murray and attempting to remember the hopeless feeling will ebb away, as it always does. But though tomorrow is and always will be another day, rest assured Cerebral Palsy, I really really hate you so much right now. For everything you stole from all of us. I hate you. 

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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
xxxx
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Friday, 3 June 2016

Footnote....

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. http://urdd.avantimedia.tv/Competitors/URDD_2016_404_67553_web.mp4
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
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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?

No.

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. 

xxxxxxxxxxxxxx










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Sunday, 22 May 2016

Thank you..

...for the incredible response to my previous post. It is now the most viewed post I have written since starting the blog in 2008. It has been shared by Scope Wales, which I find extraordinary. It has also been shared, amazingly, by the Association of Paediatric Chartered Physiotherapists, who emailed me to say they had picked it up and felt it would be useful for their students to understand a little more about some of  the children they would be working with and their families. WOW. I always say I will be completely honest writing this blog, as otherwise what's the point? Even though sometimes that can be really, really hard. But I guess a little honesty goes a long way.
I have received some wonderful emails from some of the parents who have picked my blog up just from the sharing of this post alone. I needn't tell you how lovely this has been, since a huge driving force for me to start this blog was that it may reach out to others in our situation. When Elin was born, it was the internet that was able to bring us the most comfort-various websites, social media groups and blogs by other families- given that at the time we knew of nobody locally who had been through the same thing. Now, my blog has been a source of comfort to others and the journey has gone full circle. Not that this means I am going to stop any time soon. Just wanted all you readers, sharers and champions of this blog to know what your time has meant to me.
It has meant everything. 
That I'm not pouring my heart out in vain, that people are interested in our girl, that we will never be alone in this- and that even complete strangers can kind beyond measure. 
So thank you.
You're all awesome :-)
Ruth x
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