Living with Cerebral Palsy 🍋🍋

Thursday, 15 June 2017

Being Elin's Daddy

Hi, I'm Elin's Daddy.  Ruth has asked me to write a post for her blog for Father's Day. I wasn't sure I could at first. Not because I didn't want to, but because I was worried I wouldn't know where to start...I've never written a blog post before. I don't even read any blogs (apart from this one, which I read when Ruth shoves the laptop under my nose and says 'read this in case there are any spelling mistakes') and I wondered..... how much I should write? What parts of my life with Elin should I talk about? I finally settled on going back to day one and seeing where it took me. The below post is the result. I hope that you enjoy reading it and I hope I can do some justice to describing the incredible job I get to do every day, the job of being Elin's Daddy.
If you read Ruth's blog regularly, you will know that life in July 2008 as we knew it changed forever and would never be the same. To say I was laid back about Ruth's pregnancy is probably a bit of an understatement. I just refused to believe, once those first few tentative weeks had passed, that anything would go wrong. So when it became clear that things had actually gone very, very wrong following Elin's birth I was crushed in a way I still can't describe. Unlike Ruth, who worried for Britain, I had never allowed myself to imagine an outcome of our baby's birth that was anything other than happy. So the shock was immeasurable really. Devastation doesn't quite cover it. I was broken.
As the days and weeks rolled by, and a list of diagnosis' for Elin emerged, it was difficult to see beyond the darkness. I remember an overpowering sense of anger that I carried around with me. It stayed with me for months and months. Anger and frustration, that this awful brain injury had happened to Elin in the moment of her birth, the moment her future should have been a wide open blank canvas and instead became instantly mapped out forevermore. I can see now that I should have pushed to get some counselling (I know Ruth has blogged about this) but at the time I know I would have refused. It was a classic case of male-buriel-of-head-in-sand-and-get-on-with-it syndrome. I think it comes more naturally sometimes to Mums, to get involved in social media support groups, to talk to friends, to meet other families and let out emotion. I dealt with what had happened by basically retreating into a shell and sometimes, even almost nine years on, I find it difficult to want to emerge. My bubble with Elin feels safe, I don't have to face anything in our new-normal. When it's just us together playing and laughing at home, the blinkered isolation almost brings a strange kind of relief.  It's 'real life' that can feel exhausting.
This where I have to pay homage to Ruth and the way our relationship works. Her strength has, from day one, astounded me...but I know she would say the same about me. We buoy each other up. When she is down, I make her laugh. When I am down, she talks me round with her stoicism and her almost relentless optimistic outlook. Anyone thinking that a 'Mum making lemonade' (when life has given her lemons) is a gimmick or just a nice blog title does not know Ruth. She really does strive to be that positive. So together, we are a team. The 'Elin's Parents' team; and luckily for us it's a team that works really, really well because neither of us would manage without the other and neither of us would want to.
So back to Elin and being her Daddy. It's been hard over the years, obviously. Until very recently I was working full time. I keenly felt each appointment I missed, each school meeting, each therapy session. I hated watching Ruth navigate the emotion of all these things by herself, but I was having to hold down a job. That on top of the constant worry, sleepless nights (Elin, as you're probably aware has never been  fan of sleeping!) and hospital admissions made for a pretty stressful few years. It was really hard to not let it all get to me at times. But like a million other special needs Dads every day, there was little choice.
I can't pinpoint the time that things began to get easier. As the years passed, Elin became a little more stable slowly but surely. interesting that the things that seemed most bleak about our situation in the cold light of diagnosis when she was a baby, gradually became the things I love and cherish the most about parenting Elin. She will always, always be my baby. I will always need to protect her, she will always need me. Elin's world is a very small one. The centre of that world are Ruth and myself. That will never change. The job of being Elin's Daddy will never be over, I will never need to resign or hand the reigns to someone else. She will never leave home. There is a consistency, when things never change with your child, that is almost comforting. Elin will always be Elin, just as she is, no more, no less. Don't get me wrong. I can't say I wouldn't change her- of course I would. I would give her the life she was entitled to in a heartbeat. I would give Ruth the opportunity to know life as an ordinary Mummy, Elin the opportunity to live the life that was waiting for her that day, so rich with possibility and unknown adventure, the very basics of what any newborn baby deserves. But I can't do that. So then I look for the positives and I hang onto to them.
There are so, so many positives. The alternative of her existence, the other alternative I mean- that she didn't make it in those days in ICU after her birth- is unthinkable. So ultimately, that is how I deal with each day and have done for the past nine years. We are so lucky to have her, it is a miracle she is still here. I am more than lucky to be able to call myself her Daddy. Proud is not the word. Her smile can knock the wind out of me- if you've met Elin you know what I mean. She is the single most amazing person I have met. Her spirit, which is tangibly joyful, asks for no pity. Neither do I. What Elin has taught us about life is immeasurable, she has turned my perspective about what is important in life upside down. She has nothing, material objects are meaningless to her. She has no voice (She has never, and will never say a single solitary word to me. I will never hear her call me 'Daddy'. But I am her voice and I will use every last breath to make sure her life is the very best that it can be), no mobility, no swallow, no understanding of the world as we know it. Yet she smiles, she laughs .. sometimes all day long. She takes pleasure in the simplest of things- a familiar song, her big sister's voice, a cuddle, raspberries blown on her tummy. She is the happiest soul alive and she knows only love. She will only ever know love. Her life does not need sympathy, her life, to her, is wonderful and so is she. I can lose hours at a time in her company and never feel that more than a minute has passed.
So I see myself as one of the lucky ones. My girl is a miracle, the joy she brings to everyone around her is unreal. It is an absolute privilege for me to say that I am Elin's Daddy. On Sunday, she will not bring me my breakfast, or excitedly run up to me with a home made card. She will not have chosen a present or proudly bought it with her own pocket money. She will not throw her arms around me and wish me Happy Father's Day, she has no concept of what it is. But she does know Daddy, that Daddy is me, that Daddy is safety and as she grins up at me on hearing my voice, with her lovely, funny, toothy smile, that just about feels like the best gift I could ever receive.
Who wants a 'World's Best Dad' mug, anyway?
You and me against the world, kid.
Happy Father's Day.

Paul x

Friday, 2 June 2017

A Postcard from The Cotswolds......

Well we're back from the Drake family get-together holiday we've come to call 'Drakation' (geddit? 😜) and this year was definitely not a disappointment! This was our stunning home for the week, 'Swan House' in Winson, Cirencester. (You can find the website here: ) I think it might be my favourite Drakation destination so far. Last year's house was brilliant but this was a little less stately and a little more homely. There was a lovely open plan downstairs (perfect for wheelchairs!) and the kitchen/ dining area where everyone always tends to congregate had a more 'farmhouse kitchen' than 'Downton Abby' feel- complete with massive Aga (soooo jealous!!). The bedrooms were really tastefully decorated, all with an ensuite  and there were two super-cute attic rooms accessed by a secret-looking spiralling staircase, perfect for children wanting to escape and explore away from the adults!
The lounge was also pretty large and even had a grand piano, but aside from tuning into the odd election debate this week we hardly went in there, the kitchen/ dining room and all the French windows leading directly onto the patio and garden were just too nice not to sit in!
Speaking of the garden, it was pretty amazing. I can only imagine the work that had gone into it and it was definitely much appreciated by us! Being so lucky with the weather we actually didn't venture much from the garden all week- there just wasn't any need. Aside from the lake which wasn't ideal for very young children (we all developed eyes in the backs of our heads this week!) it was basically fantastic for the kids to run around in all day. There was even a shallow river right at the bottom for paddling. Bliss!!! 

If running around the garden all day or paddling in the stream wasn't your bag, there was a beautiful flower-garden to sit by and enjoy in peace- simply stunning. Elin liked this because it smelled wonderful and the colours were so bright.
Elin sitting at the table using her new 'Go To' seat by Firefly 😊
Not that we stayed at the house the whole time! We did get out for the day to a lovely little town called 'Bourton On The Water' which had a model village, car museum and 'Birdland' attraction. We took Elin to Birdland thinking she would love it and she did! The Emperor Penguins were her favourite of course 😊
Elin not only saw Penguins but also went exploring for Dinosaurs! How exciting!!
Did I mention just how good Elin has been in her chair this holiday? We've been so proud of her. When Elin is sitting well it makes everything so much less stressful for her and for us. We were able to join in and get about with everyone without worrying how it would affect Elin's dystonia and that's been fabulous. 
We also visited a real chocolate-box style village called Bibury. So did about a million other tourists that day which made negotiating parking and pavements a bit tricky but it was well worth a visit even if random strangers do photo-bomb your photographs!!
Elin has absolutely loved this holiday. Without a shadow of a doubt she revels in the company of others, in particular when there are children around. It's been so nice to see her enjoying being around the other kids. Little Ivy who is only 18 months took it upon herself to be a sort of protector to Elin and not an hour went by without her shouting 'Elin!' and trotting off to find her and stroke her hand/give her a kiss. So cute! 

All the other young Drakation attendee's as well as Elin .. Tabitha, Gruff, Ivy and Arthur. 😊 Needless to say these guys also had a ball and were SO GOOD!!! We were all very proud of them this holiday.
Of course Elin's big sister Caitlin was missing this year-apparently  young trainee actors are not allowed half terms!! Luckily she was able to come home for bank holiday weekend so Elin did get some Caitlin-cuddles in, but we were all very sad she couldn't make the holiday and it wasn't quite the same! Elin would have loved to have her there but we know there will be other times and in the meantime we had to make do with face time and WhatsApp. Thank god for modern technology! 
We really were so lucky this week with the weather. Whilst the rain was almost biblical on the way down and the way back, fortunately we seemed to enter a completely different tropic at the border of The Cotswolds and didn't see a drop. This meant lovely lazy lunches outside on the patio as well as all the playing in the garden. Unfortunately, we didn't get the traditional group photo this year- we spoke about getting it all week and never actually did! Way to much going on all the time with nine adults and five children to keep track of! 
Did manage a couple of selfies though (this one looks a bit 'Midsummer Murders' I think! Watch your back.....)

Although the house wasn't adapted for disabilities, we managed Elin pretty well there. We are lucky she is still quite small for her age so at the moment we can stay pretty much anywhere as long as we are prepared to do some careful lifting and strategic sitting/resting. What has made this easier though, is the purchase of an 'Aero-bed' for when we travel. I would really recommend them for parents of younger disabled children. It's basically an air bed that blows up to full single bed size and height (you just plug it in and it take about two minutes) then deflates again to a relatively small size which you can pop into it's own carry-bag. Easier for your back for bedtime/changing time. Annoyingly I forgot to get a picture of it but here is the link to them if you're interested.
Since check-in wasn't until 4pm on the day we arrived, we all met (coming from Wales, Yorkshire and London as we all were!) in a pub for lunch. I think this is when I knew for sure Elin was going to be in a good mood this week. She was so chilled out and sat in her new 'Go To' seat by the table with everyone brilliantly, which was exactly why we bought it. Result! 
So in summary a great time was had by all and I would highly recommend Swan House at Winson if incredibly quiet, picturesque dry-stone walled villages are your thing. 

Just glad we stocked up on wine because the only thing missing was a village pub. Ah well, you can't have everything I guess! Hope you all had a lovely week too, folks! 
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