Living with Cerebral Palsy 🍋🍋

Thursday, 20 July 2017

Nine things I would tell myself on the day Elin was born.

Happy 9th Birthday to Elin!!
 Needless to say it's going to be an emotional weekend. I've been thinking about how utterly terrified I was on the day Elin was born in 2008 and in the days/weeks/months that followed. How nothing seemed like it would ever be the same again. I really, really wish I could hop into the Tardis and go back and give my 26 year-old self some advice. So that's what this post is, nine things on Elin's ninth birthday that I would tell myself as I sat by her cot in Special Care.
Nine practical things I wish I'd known, that may have helped, just a little.
Everything will be ok.

What happened to Elin during her birth was completely and utterly, categorically100% not your fault.

When you get home things will not magically become ok. Getting Elin home from Special Care is not the end, it's only the beginning. It will take months before you even start feeling anywhere close to 'normal' again. Don't pressurise yourself to bounce back. Don't pressurise yourself to do anything. 

Don’t feel obliged to see your Mum friends and their babies. They will be incredibly kind but cannot possibly understand what you are going through in their warm and fuzzy glow. The milestones their babies are hitting are too painful to watch as Elin lies like a beautiful and precious china doll in your arms.  Instead get in touch with another Mummy in your position. There will be nothing more invaluable to you than another Mum who understands your emotions-all seven hundred of them- without you having to say a word. Anybody else will still be there when you are ready.

Ask for help. Ask for people to bring you cooked meals, let your mum do your washing when she offers. Stop trying to be brave. Nobody expects it. Cry as often as you like. Get counselling, its not shameful or weak, its there to help. 

Don’t be sorry when you see that older child with severe disabilities. Don’t be heartbroken and terrified that the girl with the floppy body, flailing limbs and adult bib will one day be Elin. Because when one day that IS Elin, that is not what you will see when you pass another child like this. You will see her amazing sunny smile, it will make you smile, too. You'll see  the laughter at her Mum’s voice and the unmistakable bond between them as she sings her a favourite song. You will be thrilled with how strong she looks and how well she seems. You will exchange a knowing glance of solidarity with the Mum pushing the chair looking back at you.  There will be a world of pain and exhaustion but mostly immense joy and gratitude in that one glance. You are united in a special club, the secret club only a handful of parents will ever understand, of what it’s like to raise your amazing, wonderful, loving, incredible severely disabled children. Pity will not even enter your head.

You will experience more compassion, kindness, love and understanding from your family, your friends, work colleagues, acquaintances and even complete strangers than you ever thought possible. You will realise the world is not always a bad place. You will see the goodness in people’s hearts in how they respond to Elin and you will count your lucky stars every day for those that surround you. These people will save your life without ever even knowing it.

 One day, when the pain has ebbed away, when the memories and trauma of this day have faded, when your tears have dried up, when Elin has settled into a life, when there are fewer hospital appointments, when has been seizure free for eighteen months, when she goes to a school she loves and is happy every single day, when smiling is the very first thing she does after opening her eyes, you will be lighting a number ‘9’  candle on her birthday cake, incredulous that you got this far and you will feel like the luckiest Mummy on earth. I promise.

 Everything will be ok. There's nothing to be scared of. Actually, everything will be more than ok.

It will be wonderful.

      Happy Birthday Elin 
     xxxxxxxxx
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Monday, 17 July 2017

A letter to my daughter...

I don't know why I didn't share this on here when it was published. I had something published in the Guardian, I should be photocopying the hard copy I gleefully bought from the paper shop and wallpapering my downstairs toilet with it!  Perhaps I felt like it would be bragging or maybe I felt slightly fraudulent because this letter was inspired by a previous blog post I had written which you may have already read. Perhaps I worry way too much about what people think, and when something-anything-I write gets published in the Guardian I should stop being so stupid and find a great big trumpet and blow it to my hearts content.
Well, better late than never! This was shared via The Guardian's Facebook page over 600 times and via The Guardian's own website 1,382 times so far.  I VERY tentatively read the comments under the post on their Facebook and can't believe how warm, understanding and positive they were. Lots of other mums chose to share their own experiences too. It felt like an honour to have inspired any kind of Saturday morning chat about what it's like raising a disabled child, even more so because of the positivity that surrounded it. No internet trolls under the bridge of publication this time. Phew.
I can finally say I'm quite proud of this (even though there are bits I want to add/edit/change because it wouldn't be me if I didn't- I found the word count particularly hard to stick to) and though I am aware the point of this regular 'A letter to.....' section is anonymity, I decided to let the Editor publish Elin's name in the last line (he called me to make sure it was ok) because I felt naming Elin would make it more real and give her story more impact.
Anyway, here it is. I promise if there is ever a next time  I will shout it from the rooftops. The week of Elin's birthday seems like a good time to share, as it always makes me quite reflective.
Hope you enjoy
Ruth x
https://www.theguardian.com/lifeandstyle/2017/jun/10/letter-to-severely-disabled-daughter-always-wanted-write
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Friday, 7 July 2017

Why I love Elin's school


Recently Elin came home from school with a photo which reminded me of just how much I love her school. Having a local school like hers is just a crazy stroke of good fortune. It's the sort of school that, if you have a child with PMLD, you'd be getting on 'Right Move' and looking to up sticks just so that your child could attend. So we are enormously grateful that it just happens to be in our town and that Elin was enrolled at two and a half years old.
Regular readers of the blog will know that I have waxed lyrical about the school many times in the past. It's hard to describe what they have provided over the years for Elin with their ethos of inclusion and high standards of education. Each child, regardless of ability, is fought for, nurtured, encouraged, developed, taught and most importantly, loved.  This ethos was initially created by one of the most dedicated champions of the rights and needs of children with PMLD in education as you are ever likely to meet. Wendy Jones, the Head of Elin's school until her retirement last year, quite literally created (down to designing the new building of the school herself a few years ago to suit the children in the best way possible) a place where children like Elin could flourish and never ever be seen as less able, less important, less in any way. She spent her whole career cultivating a place of equal rights, of celebrating children with severe disabilities, of pushing boundaries and making children the best they could be. In fact, the school's motto is 'Working together to be the best we can be'. The Head accepted nothing less than excellence when it came to the teaching of her children at the school and we parents observed nothing less than excellence as a result. The staff too are amazing and if you ever want to see the epitome of 'Teamwork' just pay them a visit. It is not a school, it is a family. In addition to the outstanding teachers (that's official, ask the Estyn inspectors) there is an army of teaching assistants, each one assigned as a key worker for every child, each one like a personal guardian angel. The work they do day in, day out on a 1:1 basis with the children is sometimes incredibly difficult for them but always beyond compare. We joke about Elin's key worker being her second Mum. But when you consider the hours Elin spends at school every week, she actually is. There's nobody we'd rather hand the reigns over to outside of family for six hours a day in terms of caring for our girl.  It's little wonder to me that years ago the school became widely regarded in the circles of special needs education as a centre of excellence and somewhere that people came to observe good practice from all over Wales (and probably further).  The Head of the mainstream part of the school, Mrs Thomas, has also for years and years worked equally hard to create an excellent and revered environment for learning. She values and has carefully fostered the partnership with the special needs unit above anyone's expectations. This part of the school, too, has been named as outstanding and rightly so. Along with the incredible senior management team Mrs Thomas is just as dedicated as ever to maintaining this reputation and continuing to work in the very best interests of the children, since the sad retirement of Wendy last year. I would like to say this is the 'norm' for special needs school's but I know for a fact it isn't, though of course it should be. We know how lucky we are.
One of the most important things the school holds dear is inclusion. I have blogged about this before. The Christmas concert and Sports Day being examples of when I have seen it in action (find my post about the Christmas concert and the why I love the relationship between the children here). But the truth is there is a dedication to inclusion that runs through each working week at Elin 's school. I have been frequently told that the children from mainstream have been desperate to come and play with Elin. I know that sometimes in the past coming to play with Elin has been a chosen 'Golden Time' reward. These children are CHOOSING to play with Elin in their own time. The staff encourage the friendships as equal, in no way are the children like Elin seen as people they should feel sorry for. They get as much out of playing with Elin as she does. It's not even a big deal to them.
But it's a massive deal to us.
The nature of Elin's school is that the children in her class are not really able to interact in the usual way with one another. Although they clearly enjoy being around each other and regularly take part in activities together, most are non-verbal. This means that Elin only hears adult voices. She only really 'plays' with adults. That is until the children from mainstream come in. Children bring with them an energy, an innocence, an exuberance that Elin absolutely thrives off. If it wasn't for these kids she would be missing out on that. But in the true style of her school they won't have her missing out on anything. So along they come, reading to her, talking to her, playing with her. She is just one of them.
It's difficult to describe how this makes you feel as a parent. We all know the benefits of inclusion for children, it goes without saying. But nobody talks about the benefits for the parents. That we get to see Elin doing exactly the same as the other children. That she doesn't need to sit out of Sport's Day, that I can proudly show off the Sport's Day photo's like all my Mum friends. That she is not segregated by the fact she has wheels where her feet should be. She is in the school play and her class are taking part in the careers day, or the World book Day fancy dress, or taking part in imaginative play together, or the fun day at the end of term.
How can you explain what that means, as a Mum? Something that really upset me when she was a tiny two year old going off to Nursery was that everything I knew about primary school would be 'different' for Elin. Everything would feel 'alien' and she wouldn't get to do all the things my friend's kids were doing, the things I did when I was young, the things I was doing with my classes as a teacher myself.  But it turns out I was wrong and I can't explain how happy I am that I was wrong. Elin hasn't missed out on a single thing. I can't say anything meaningful enough to convey what Elin's attendance at this school has meant to us over the years. Her inclusion and her worth there. But I can say thank you.
Thank you for working together as a school to give my daughter moments like this, which make us cry when we see the photo in her home school diary because it's just so wonderful. Not only for her, but for us too. Look at the faces of these lovely boys during a "Grease" dress up afternoon-they are so proud to be with Elin! There is zero pity there. I've been told that one of them in particular has been her friend since they were tiny, actively seeking her out to 'look after' during shared school time.You see, when we see photograph's like this, we just don't feel so very different. We feel included.

***EDIT***  Before publishing this blog, I wrote to Mrs Thomas to ask permission to use the above photograph. In a move that typifies the thoughtful attitude of the school, I did not just receive a letter or phone call back from her. I received a phone call from all four boys pictured. As they took it in turns to come onto the phone and speak to me an EXTREMELY large lump formed in my throat! They told me that they would be 'very happy' for their photo to be used in my blog. They said they were proud to know Elin, that they felt lucky to be part of such a school, that they looked forward to visiting Elin and her friends. Playing with Elin and the other children is one of their favourite things to do at school they told me. One boy said, and this is a direct quote 'When I see Elin her smile just brightens up my day'. 
Wow.
Her smile brightens up our day, too.
Thank you.
xxxxxxx

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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
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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: http://www.swanhousecotswolds.co.uk ) 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.
http://www.argos.co.uk/product/6341206
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! 
                                                                            xxx
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Friday, 26 May 2017

Look for the helpers....

On Monday Huffington Post UK  published a recently edited blog post from my archive originally entitled 'The Kindness of Strangers' http://www.huffingtonpost.co.uk/ruth-drake/why-i-have-cried-over-the_b_16751178.html It was a post about how wonderfully the majority of people treat Elin. People that don't know us at all,  and how despite some negative reactions to Elin along the way, most folk never cease to amaze us with their empathy towards her and us as a family.
This was, of course, before the atrocities in Manchester on Monday night. In a venue we have ourselves watched concerts in countless times, in a city we know inside out we could hardly believe what we were seeing. As the full extent of the horror unfolded around me on Tuesday morning, I  was struck mostly by the stories of those who helped. Those people who risked their lives to protect others and the stories of complete strangers showing an incredible amount of compassion towards those they had never met. I was finally broken, whilst watching the coverage, by a story of people forming human chains towards the exits in order to help those in wheelchairs escape. This before they would have been fully aware of what had happened or what danger they still may be in themselves. That could have been us, that could have been Elin stranded amongst the terror.  How would you ever repay that sort of kindness, that pure human solidarity during such life-changing moments?
On Monday I could never have guessed how relevant the message I was hoping to impart with that particular blog post would be, as events unfolded in Manchester that night. As unthinkable tales of horror reached the media, so too did stories of amazing love, selflessness, strength and support between strangers. A homeless man sleeping outside the Arena walked towards the blast, knowing that he needed to help without fear for his own life and ended up clearing debris and caring for the injured. NHS workers, Fire Officers and Police from all over the North turned up to report for duty- so many that some had to be sent home.There were queues of people waiting to donate blood, people who had travelled from all over the UK. Other's turned up with food for the emergency services workers, or walked the streets handing out bottled water. Manchester families took in the lost, taxi drivers offered free rides to anyone who needed them. Children in school's across the country signed cards and flags to send to the families of the victims. Crowd funding pages were set up and amassed thousands of pounds in a matter of hours. It seems that in times when we see the very worst of humanity, we also see the best.
We read so much in the newspapers about how 'desensitised' we are all becoming to basic human values, particularly the younger generations. How we are a 'look down' population, staring blankly at our phones, no longer talking to one another, not fully engaging with each other's lives and problems. Yet in the wake of this tragedy, all I could see was love and unity. An act designed to cause fear and hatred inspired strength and love. The human spirit is a formidable force and we have to draw such hope from what we know about those strangers thrown together so unexpectedly on Monday night.
Something I saw quoted again and again on Tuesday was a story told by Fred Rogers, the popularity of which indicated to me our very human need to rise up from devastation. To find good where there is evil, to see positives where it seems there are none. It was a story he told about when he was a boy and used to be upset by things on the news:
"My Mother would say to me, 'Look for the helpers. You will always find people who are helping'. To this day, in disaster, I remember my mother's words, and I am always comforted by realising that there are still so many helpers-so many caring people in this world."
This is the message we must carry forward with us in the wake of this awful attack. As we as a family have come to know, there really is so much love and kindness in the world, sometimes you just need to open your eyes a little wider to see it. Always look for the helpers.
Have a happy and peaceful weekend, folks

 xxx
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Sunday, 14 May 2017

Why post-natal/post diagnosis mental health support for special needs Mums AND Dads is so important.....

As we exit Mental Health Awareness week I have noticed a plethora of informative, enlightening, brutally honest and sometimes extremely moving, articles highlighting the subject across social media. Perhaps one that piqued my interest the most was an article  regarding post-partum mental health, in particular focusing on parents who did not have the expected birth experience, and for whom things did not ‘turn out ok’ in the end. The article (which can be found here http://community.fireflyfriends.com/blog/article/post-diagnosis-who-looks-after-special-needs-parents?utm_source=newsletter&utm_medium=newsletter&utm_campaign=post-diagnosis-who-looks-after-special-needs-parents&utm_content=post-diagnosis-who-looks-after-special-needs-parents) inquired ‘Who looks after such parents?’ The answer, in my own personal experience, is nobody.
I don’t think anybody would disagree that support for parents following trauma should be offered as soon as possible. However, due to an extremely underfunded and overworked NHS, this support is rarely forthcoming. My daughter Elin was born ‘flat’ in 2008 following an epic and exhausting labour. All hell let loose as soon as she arrived- my husband was told to pull the emergency red cord above my bed and we waited anxiously amongst the chaos for a cry that never came. We saw only a flash of marble-white flesh as she was bundled onto the resuscitation table next to my bed and ‘worked on’ to no avail, before finally being whipped away and attached to life support, whilst we waited in an empty room not knowing anything for what felt like a lifetime. Her Apgar score was 0 and she was put on a ventilator in SCBU where she stayed as we watched and waited for 11 days until she was finally able to breathe unassisted.
The Midwives who had attended the birth were offered counselling sessions within a week. We were never offered counselling, though we did have the where withal to request it ourselves. I was told that due to high waiting lists we could have an appointment through MIND for December (it was July). So instead we navigated through the following months of horror completely by ourselves: a month on SCBU; then home to a simply crazy number of appointments; massive professional input; weeks spent in and out of hospital; zero sleep; administering several medications a day; tube feeding; watching Elin have seizures daily; open surgery at Alder Hey and finally receiving a devastating diagnosis of severe Cerebral Palsy due to lack of Oxygen she had suffered at birth.
During those dark months we simply survived from day to day. We tried to support one another as our own hearts broke inside us without a second thought for counselling. In many ways it was easier for me, people asked how I was. I was the Mum, I was the one who had given birth and most people understood how awful it had been. But the effects on my husband were equally far-reaching and Dads often seem to be forgotten in post-partum trauma discussions. My husband suffered horrendous PTSD and flashbacks after watching me give birth and observing the ensuing nightmare unfold. It was he who was forced to leave Elin and I in the hospital alone as he informed family and friends of what had happened. It was he who drove home to an empty house and put away the Moses Basket, convinced we would not be needing it (he later told me he drove back to hospital after doing this but never made it- he turned round, drove back home and put the basket back out. He wasn’t ready to give up on our girl). It was him who was warned in grave voices by the doctors that our baby may not make it as I was bathed and medicated in my room, oblivious to these discussions. The first time he saw our daughter through the glass of her incubator, surrounded by machinery dwarfing her tiny frame, he was alone. To say he was traumitised would probably be an understatement. So we both struggled through our emotions after bringing Elin home.
I remember one particular time when I just couldn’t get up from the bathroom floor where I had crumpled. I simply thought I was going to die of grief. Yes, perhaps we could have sought private counselling but it quite literally never occurred to us. Once we brought our baby home from the SCBU there was too much to think about and our own mental health was the last thing on our overflowing to-do list as we cared for a very sick baby.  We needed someone to talk to, to suggest we get help and explain the far-reaching effects of trying to deal with what we later came to understand as PTSD without professional support.
I regularly wonder if we had started counselling in that first six months after Elin was born, would we have had the emotional tools that might have made the following years of devastation perhaps that little bit easier to handle?
Any parent who has received a life-altering diagnosis for their baby in the days or weeks following the birth needs help, it really is as simple as that. An SEN parent friend of mine succinctly explains it ‘It’s like they say this is what your baby has. This is your life now, so deal with it’.

Post- partum/post diagnosis mental health support is SO IMPORTANT!! The healthcare professionals such as the Midwives should absolutely be offered counselling after trauma, but so should the parents. It’s time to find the funding. It’s time to redress the balance.

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Sunday, 7 May 2017

The Alien in the room..

So a fortnight ago I pulled my back lifting Elin. It was very painful at first and then it became super annoying, since I couldn’t easily move around and obviously this had an impact on what I could do with Elin day to day. Thanks to an enthusiastic Osteopath who seemed like he was trying to murder me at first by basically jumping on my semi naked torso, making my back sound like a bag of popping candy, it’s actually a lot better than it was. However I’ve had to finally admit what people have been trying to tell me for ages. I need to start using Elin’s hoist.
 I have a total and completely irrational hatred of the hoist . A hatred which far exceeds any feelings about other specialist inanimate objects that are necessary in our lives now that Elin is almost nine. Until now it’s just been dangling in the corner of Elin's room like an evil science fiction- esque spider which I avoid eye contact with. In the past I have felt like Sigourney Weaver in Alien on catching sight of it, I’d break out into a sweat, try and duck from view and if I’d owned a gun I’m pretty sure my reflexes would have involuntarily whipped it out and blasted it's stupid, ugly horrible head off.  It was because looking at it was like staring down the barrel of our future with Elin, a future I wasn’t ready to accept. It was too clinical, too impersonal a way of moving her. I wanted to be able to carry her forever.
Part of my issue with the evil hoist is that it reminded me so much of hospital wards and old folks homes, like the one Elin's Grandad lived in during his final few years with us. This was not something I wanted to associate with my baby. No way, I didn't want the hoist for her. (Seriously irrational given she has been using a wheelchair and other mobility equipment such as her standing frame for the whole of her little life).I would never have chosen to use it.  But choice is something I have learned to relinquish to a degree in our funny topsy turvey world. It doesn't matter whether I want to use it or not,  I have to. Elin needs it, I need it. I’m no good to Elin with a damaged back after all. It's time to stop procrastinating and start using. The hoist must become part of our lives. I have to concede at this point that at least we HAVE a hoist, many families may not. I should be, and actually am, grateful that we have the option. Also, as sure as I am of my hatred of the hoist I am equally sure that like everything else acceptance will reluctantly follow regular usage. I know that soon, I will wonder what we did without it or why I was so scared of using it in the first place. One day I may even be singing the praises of the hoist. I am told Elin loves it in school and have seen her laughing in it with my own eyes, so there’s a strong possibility that hoisting can actually be something fun we do together. Like a sort of indoor swing maybe ☺ The evil spider may become a beloved pet. I just need to be a bit more Lieutenant Ripley about it, toughen up and crack on.
After all, that's what Elin's doing.
Like so much else in my life I think I need to take my inspiration from her on this one.
Have a great week, folks!
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Monday, 17 April 2017

Music for the soul.

On Sunday we went out for Easter lunch. Nothing fancy, just a nice old fashioned pub meal (with nice old fashioned prices, which kept Paul happy haha). The place was pretty empty, as we were eating quite early, but there was a man playing the piano really beautifully for our entertainment. An old fashioned gesture for this old fashioned place. I knew immediately that Elin would enjoy it so we sat down and watched her listening carefully.
It could not have escaped the pianists attention, how we took a while to unstrap and lift Elin onto the seats by the table, with her splints and boots getting caught on everything as we looked for a space to park her wheelchair.  It could not have escaped his attention how we watched her listening, how her eyes darted around, trying to anchor herself as to where she was and where the music was coming from. How we did not order food or dink for her and the Creme Egg brought by the staff for her was left untouched. It could not have escaped his attention that this big girl before him sitting slightly awkwardly by the table stayed silent and was not always able to look in his direction.
It did not escape his attention.
So he had a choice to make.
In light of my previous posts you will know we have not come to expect people to always engage with Elin where they may usually engage with 'ordinary' children. This guy was busy, he was working, he did not need to move from his piano chair. He had the perfect excuse not to. Yet- he made his choice and just like that, I realised for every person out there who may feel uncomfortable engaging with Elin, there's one who is happy to. More than happy to. 
He chose to come over to us and ask us what Elin would like to listen to. He chose to smile at her and talk to us about her and actually tailored his music for her. When I told him she liked Disney, he said he would like to play 'Frozen' for her. It was so thoughtful and kind of him, just a truly lovely gesture. Up to this point Elin had been largely indifferent to the music, although you could tell she was straining to concentrate on it and listening really well. What happened next was truly magical and I will forever kick myself that I did not video it.
Elin's reaction to what we have always thought to be one of her favourite songs was incredible. She literally stilled. Her eyes widened and her whole face was locked into thinking. As the familiar 'Let It Go' riff was played (how much do we all wish we'd written that song?!? There can't be a child or parent under the age of 12 who doesn't know every bar of it inside out!!), she broke into THE biggest grin you have ever seen. This was followed by peals and peals of laughter. There was absolutely no question of it being a coincidence. She recognised the song. Considering we haven't listened to it in quite a while this was even more incredible to us. How clever is Elin? It really made me quite teary and very, very proud.
I love how Elin responds to music. It's like it touches her soul. It gets to her in a way that nothing else quite can. I suppose music is universal in it's ability to move, regardless of understanding, language, age and any other barriers that dictate our abilities to enjoy other forms of entertainment. It speaks to her, she understands something in music that she cannot necessarily understand in words. Its an emotional understanding rather than an intellectual one. It's the same reason why a few bars of a certain song can reduce you to tears (I'm looking at you Bright Eyes by Art Garfunkel) yet images of atrocities on the news for example each day may not. You cannot become desensitised to music. I love that about music and I love that Elin gets to experience that and share it too.
The piano man (George) was visibly delighted by Elin's responses and played more Disney songs for her.  He had such a kindness in his eyes, he really made a difference to our experience that day. I've since looked him up and he is a highly trained musician from the Musical Academy in Bucharest. If you ever want a player for a function or family event I would highly recommend him (link below).
So it turns out for every family at the zoo, there is a George the piano man playing a different tune.
Happy Easter folks.
Hope you found the music, and the sunshine, in yours.

xxxxxxx
Mummy Times Two
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Sunday, 9 April 2017

Reflections on a crazy week

Firstly, just a little thank you to all visitors to this blog who read, shared, commented on and sent me private messages about my last blog post https://mummakinglemonade.blogspot.co.uk/2017/03/to-family-who-ignored-us-at-zoo.html.
I have never experienced such a response to anything I have written before and I have been bowled over  by how it seemed to strike a chord with people. It has had way more hits than anything I have written in the past eight years and after being featured by Huff Post Parents was chosen as a featured post on the front page of  Huffington Post UK, which was awesome.
As with almost every post I write, I hesitated before hitting 'publish' on this one. Writing this blog can sometimes feel quite exposing- I am sometimes after all writing down my innermost thoughts and feelings for anyone to read. If I over-think it I can start to feel really scared that people will judge me and criticise my choice to share my views. However, usually I know deep down whether a post might just reach someone (even if it's just one person) interested in understanding life with Cerebral Palsy and that is ultimately what causes me to hit the 'publish' button.
The response to this post in particular ultimately showed me my decision was the right one, but it was a bumpy ride to this realisation. Perhaps because it has reached an audience that ordinarily my posts might not, I also experienced my first negative comments from readers, too. I'm not going to say that didn't sting a bit because it did. I'm just not used to it and incredibly stupidly, after having opened up my private thoughts for the world to read since Elin was a baby,  I wasn't really prepared for it. On refection though, it's pretty naive to think that a post can be read by so many people in this crazy world of the internet and not receive any negativity at all and I have definitely learned something with this one, which is why I'm doubly glad I hit that button.
I have mainly learned to try and stop with all the self-doubt that public blogging and sharing can bring. It's not going to get me anywhere. Why does it hurt that some random person told me to basically suck it up before likening life raising a disabled child to being Vegan? (Yes, really!!) Why do I give a rats ass that another randomer thinks that I must be a very 'lonely attention-seeking' Mum who is 'clearly bitter and jealous of other normal families' ? Ouch. I needed the red wine after that one (it wasn't even the worst but I won't give credence to the other comments by repeating them). I think I care because I've always cared too much about what people think, it's one of my weakest points. I think I care because I'm opening up my heart on here about something so insanely personal- my daughter. I think I care because it's hard to separate someone trolling a post from a personal attack on us and more importantly, Elin.  It's beyond my understanding that anyone could misinterpret what I write about Elin and turn it into something ugly, particularly when I strive to stay positive and show the wonderful side of raising a child like her. But then a lot about the internet is beyond my understanding and so I have to be honest with myself. If I'm going to put a public profile out there and publish my thoughts on this blog I can't then get upset when people disagree with what I say, however frustrating that may be. Basically, I have to grow a thicker skin.
 It's not that I feel answerable to anyone for what I write on this blog because I can't control how people choose to interpret my words. It's just so annoying and let's be honest, hurtful, when people read your post but not your words. When they choose to ignore the message at the heart of a post and instead pick apart your choice of expression of that message. My post was just written because I wanted to inspire a little confidence in other families when faced with interacting with families like ours. Nothing more. If the post finds even just one person amongst the thousands of readers who might think twice about how they interact with children like Elin when they are out and about then I'd be well chuffed with that and THAT'S what I have to hang onto and what I do hang onto.
All that said, I was genuinely moved by the amount of positive messages and comments I had about this particular post ( the support this blog gets in general is amazing and totally humbling to me). I was especially moved by the messages I had from many families like ours who said my post resonated so much with them and  made them feel they are not alone. That is one of the reasons I started my blog in the first place - connecting with others in our situation and maybe even offering some comfort to those at the start of their journey. So to those who commented with such kindness and empathy directly on the blog or via private message, or to all those who shared via Facebook and Twitter, you really helped me to remember why I open my heart about being a Mummy to Elin so publicly when I needed it most and I'm truly grateful to you. If you need me I'll just be off growing my thicker skin....(you can from now on refer to me as 'The Rhino' 😂)
Have a fabulous week, everyone! Elin's got off to a cracking start :-)
xxxx

"The worst enemy to creativity is self-doubt"
-Sylvia Plath


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Friday, 31 March 2017

To the family who ignored us at the zoo.....

This isn't meant, in any way, to be some sort of internet-shaming rant against the family who ignored us at the Zoo. I'm sure they are lovely, their children were adorable and they spoke to them with patience and a clear amount of love during the boat ride we all shared. They were interested in what their children had to say, they listened to them and answered their questions. They were, to be honest,  the kind of parents I like to imagine we would had been, if we had made it through those sliding doors on the day Elin was born. They chatted about the animals, encouraged their imaginations, didn't raise their voices when the toddler kept climbing on the boat seats- you could tell (as far as anybody ever can) that they were just a really nice family.
So why did they avoid all eye contact with us and Elin as we sat behind them on the boat ride? Why did they not return our smiles and our attempts to engage with their children?
I'm really not trying to hold them up as pariahs of society because they chose to ignore us that day, but I have to get it off my chest. This particular family, of course, may just be the kind that don't talk to those around them anyway. We've all been there, at the park, the swimming baths..avoiding eye contact because you can't really be bothered to exchange niceties with someone you'll never see again. I get it. But something felt a little different in this situation.  It was Mother's Day, the sun was out..the atmosphere at the zoo was great. Sharing a tiny boat with someone you're not even going to glance at can start to feel a little awkward.  I want to be clear, I don't think this was due to any kind of mean spirited feelings on their behalf. I think they were scared.
That's what has upset me.
They were scared of how to react or what they should and shouldn't say to us in our isolating, unfamiliar situation. Maybe they just figured it's just easier to say nothing at all. Well here is my open letter to them about what would have been a more preferable response to us and why, perhaps by sharing this I can help other's to feel more confident about interacting with families like ours.

To the family at the zoo,
                  We were the family sitting behind you last week on the boat at the zoo. You seemed like a really lovely family and your boys were super cute. I don't want to make you feel bad. I understand why you didn't look at us or talk to us today, I truly do. It's a minefield of political correctness out there and I think you were scared to say something to us in case maybe it was wrong somehow. Perhaps, in another lifetime, I would have done the same.
                 However I want to tell you that when you see families like ours, saying nothing at all is the very worst thing you can do. Way beyond any worries you may have (in the split second you decide not to talk to us) about causing offence by saying the wrong thing. Believe me, you can't say the wrong thing- we've heard it all before and more. Our interactions with strangers about Elin are so well practised we could hold a conversation in our sleep about her with smiles on our faces. I very much doubt there is anything you could do, say, or ask that could cause us even the smallest amount of offence.
                 Please, just smile at us or better yet -say something. Ask what my daughter's name is, or how old she is. Ask us if we've been to the zoo before. Talk about the weather.  Anything you would say to an ordinary family. Ask if Elin likes the animals. (I will tell you she struggles to see very well but the noise of the flamingoes make her laugh and if she gets close enough to the penguins she loves watching their bodies glide through the water). I don't want to swap phone numbers with you and be your best friend honestly,  just please don't ignore us. It breaks my heart a little bit.
                Your boys would have benefitted so much from what you could have taught them by talking to us. That disabled children don't need to be ignored, they are children just the same. That it's nice to find out a little bit about something new. That there is no need to look away, or be worried about a small figure like them with wheels where their feet should be.  Maybe they would have asked you a few questions about Elin after we parted ways, which would have been another wonderful opportunity for you to educate your children on the positivity of differences between us all. You wasted that today and I am sorry, not for us but for you.
              I truly believe Elin is here for many different reasons. One of them is providing this opportunity for us all to learn a little bit more about the world and to appreciate it's beauty in all of the different forms, whether that be alike or very different to what we are used to. Don't waste that opportunity. Do just a little bit to change our world and you might find your own changed just a little bit, too.
Just smile. Say hello. See where the conversation takes you.
You never know what you might learn. There is absolutely nothing to fear when you see a family like ours I promise. We are really just like you, we're just sailing on a different boat down a different river, that's all.
Kind regards
The family at the zoo.
xxxx


"Education is the most powerful weapon which you can use to change the world"
-Nelson Mandella.
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Wednesday, 22 March 2017

The Mother of all fears..

How funny that 'Cerebral Palsy Awareness Day' this year should fall on the same weekend as Mothers Day, since really the two are interchangeable for me. I would like to say that Cerebral Palsy hasn't defined my experiences of Motherhood but of course that would be a lie. It has infiltrated every part of my life as a Mum from the very moment Elin didn't take that first breath. I have sometimes felt that Cerebral Palsy has stolen from me all that being a Mum should be: that sometimes, I feel more like a Nurse; that in the darker times of the past eight years I have wondered, in the absence of easy communication, if Elin even truly knows exactly who I am. Would she mind if I wasn't around? Are we bonded 'properly' like other Mummies and their daughters? My biggest fear is that anybody offering a cuddle and being a diligent carer for her would elicit the same responses from her that she greets me with. 
Deep down though, when I'm not feeling so irrational,  I know the truth is that the bond I've been so fearful about kicked in as soon as the second line popped up on my pregnancy test. That the first time I saw her, despite the tubes and the wires and the grim predictions hanging over us in the silent intensive care unit, I felt it like a wrecking ball smashing through my heart and the feeling has never left, regardless of what I thought we were missing out on together. To torture myself with thoughts of what motherhood should have been is to betray what I do share with Elin. To grieve for what never was and what can never be is not only doing nobody any good, but it demeans my relationship with her and suggests the absence of a strong bond which is very definitely there. It's true I don't enjoy the same relationship with Elin that most of my friends do with their children. I don't know the joy of first words, or first steps or anything that comes with the more 'ordinary' experience. The young children of my friends and family will, when they see me, run up and throw their arms around me. It's a lovely feeling to know someone is pleased to see you and to feel this little chubby fingers dig into your neck. But the irony is not lost on me that I have never shared such a greeting with my own daughter. Such realisations still sting, but with time I have learned to accept my own experience of being a Mum for what it is. 
It's different.
But not less. 
Not ordinary, but extra-ordinary. Because when you strip motherhood right down, what else does it mean other than pure and unconditional love, more powerful than you could ever have imagined? I feel a bit lost when Elin isn't with me, like an actual physical ache. The only thing that makes the nagging anxiety in my stomach disappear during these times is Elin's smile. As soon as I see her face, it's like a weight is lifted and I can relax again. In turn Elin will swivel her head for my voice and break out into a huge grin as soon as she hears me. It feels a little like we are two halves of a whole. Like one of those necklaces from Tammy Girl everyone in school used to have- the heart broken in two with 'Best' on one side and 'Friend' on the other. Just not really whole until they are placed together again. Yin and Yang. Elin is the best to my friend and always will be. I need to stop torturing myself because I know she thinks the same. Not because she can say it, or show it, or make me a card or run at me and throw her arms around my neck after school. 
Because I feel it. 

Have a happy Mother's Day, folks xxx
Mummy Times Two
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