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Living with Cerebral Palsy 🍋🍋

Wednesday, 4 October 2017

A Manual For Heartache


                                                    

Years ago I read an article about a condition which is prevalent in parents of severely disabled children, 'Chronic Sorrow Syndrome' , which really resonated with me.
Chronic Sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. It runs alongside your everyday life, you may not be fully aware it's there a lot of the time. It’s like a virus running alongside a programme on your computer. It’s each time you have to attend yet another medical appointment, its each time you watch your child struggle or worse lie in a hospital bed for days, each time a friends child reaches a milestone your child never will. Its seeing children the same age as yours in the street and feeling the massive chest blow of comparison. Its filling in endless forms, its finding more space in the house for more specialist equipment, its ordering the nutritional liquid feed which is the only thing keeping your child from starvation, ordering repeat medication at a rate of knots, homing specialist syringes and feeding equipment in the kitchen. It's selling your beloved car and getting a mobility car. It's having tracking hoists running along your ceilings. It’s looking for a new house when you never want to leave the place you call home. It's seeing nothing but a black hole of uncertainty past education where University and adult life would have been. It’s a calendar so full of appointments you can no longer read the dates. It's watching Elin suffer when her dystonia takes hold. It's saying goodbye, as we have had to do again this week, to another beautiful little friend of Elin's and watching amazing parents you have befriended in your joint despair having to cope with the very worst possible case scenario imaginable. It’s having to face the thought of your own child’s death. It's a never-ending oppressive thoughts that can sometimes get the better of you.
My friend Anna bought a book for me recently that has helped me to see this kind of 'chronic sorrow' grieving for what it is and which provides advice on how to deal with bereavement of any kind, as well as touching on different kinds of  anxiety disorders and depression. 'A Manual For Heartache' by Cathy Rentzenbrink focuses on dealing with loss and grief and the ensuing feelings of anxiety and depression that sometimes never go away after experiencing a life changing incident. The author's 19 year old brother was involved in a car accident when she was 17, but lived on life support for the next eight years before he died.  Her first book 'The last Act of Love' which I haven't yet read, charts this part of the story and then this book  describes how the author has subsequently dealt with what happened and forged a life in the wake of her devastation.
I would recommend this book for anyone dealing with any kind of grief or loss, or tragic incident, however long ago in your life it occurred. Mostly what she writes is common sense but there is something very comforting in reading what you know to be true written down in a simplistic, logical way by someone else who has been through something unspeakable. The writing comes from a place of bleakness, but turns into a tender appreciation of life’s beauty.
At one point she thinks of Nancy Mitford saying that though life is often dull and sometimes sad, there are currants in the cake. “Look for the currants.” Ultimately, we might never fix our broken hearts, but we can still live, and our hearts can grow and appreciate life’s wonder. That is the feeling the reader is left with. 
I found this book comforting for many reasons. I'm not sure how useful it would be in the immediate aftermath of something horrendous, where even the suggestion that a book could help you get through it would probably seem laughable. But for me, I think I really would have benefitted from reading it in the early years following Elin's birth, during my grieving process for the daughter that was never born and whilst I was trying to negotiate what I now understand to have been pretty severe but undiagnosed (largely because I wouldn't talk to anyone about it) Post Traumatic Stress Disorder whilst trying to care for a very sick baby.
Grief is such a strange beast isn't it. It is almost entirely universal but affects everyone so differently. No one-way of dealing with grief is correct, but I was glad to discover that the classic 'five stages of grief' are no longer really being referred to in psychological circles, since the more modern realisation that grief is a fluid, chaotic crazy mixed bag of emotions that sometimes never actually ends.  Thats good, it means anyone suffering does not have to feel like it is time they 'moved on' or 'were over it'. Sometimes we just have to learn to live with what has happened to us and accept we will never quite be the same. 
Obviously I am a "look for the currents" kind of person.  Or at least I am now, perhaps less so in the immediate wake of what happened to Elin. It takes a long time to come to the conclusion that you can't change your loss and so the only way forward is to accept it. But very occasionally, even after all this time, the loss will resurface and can be almost as ferocious as it was initially. Apparently this is common and known as a 'second drowning'. I think I have experienced this once or twice in the past nine years. The times when you are struck dumb by the magnitude of what happened and it's a struggle to get out of bed. The way your heart aches for the child you almost had and then aches with guilt for the betrayal of Elin as she is now by feeling that way. 
Both the article on Chronic Sorrow and the book have helped to re-focus my attention on managing my thought processes lately. They make you realise it's not just you, it never was and it never will be.  The phrase "Do not ask 'why me?' but rather 'why not me?' " is a simplistic but effective way of thinking during black moments I think. As I grow older, so many of my friends confess suffering from anxiety or depression or, PTSD or Post Natal Depression or even just ongoing worry about things which they can't control. I am glad we are able to openly talk about this stuff, as we may not have been years ago. So I share this information in the hope that we can all, whether navigating tragedy or not, somehow take back a little bit of control for ourselves by not being ashamed of looking after our mental health the way we would our physical health. We all know it's just as important. 
As the author of 'A Manual For Heartache' writes 'Something that always consoles me, that never fails to throw a chink of light into a dark day, is remembering that others have walked this path before me. Even as your heart breaks and aches and you can't imagine how you will ever feel better, you can know one thing for certain. You are not alone"
Such a simple yet powerful and important message.
Xxxx




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Wednesday, 13 September 2017

Mission Disney

It's difficult to articulate why taking Elin to Disneyland is so important to me. It started I suppose with an early Disney obsession. My twin sister and I would devour our Disney VHS's until they were worn out and even had a video of sing-a-long songs filmed at the holy grail of imaginative destinations, Disneyland. God how we begged to be taken there! As we made the transition from kids to teenagers, films like 'The Little Mermaid', 'Aladdin' and 'Beauty and the Beast' seemed to represent an escapism from the unsettling strangeness of impending adulthood and maybe that's why we think of them so fondly. My walls at fifteen years old were covered with Brad Pitt, Leonardo Di Caprio and Johnny Depp but also 101 Dalmations and Lion King posters. Before you dismiss me as a massive saddo I promise I was not alone! It was the golden age of Disney and maybe the golden age of a certain kind of pre-social media/mobile phone innocence lost forever now I guess in the world of early teenage years.
Luckily for us we got to visit Disneyland in the end for our 16th birthday (thanks Mum and Dad!!) in Florida and it really didn't disappoint. So Disney takes up a lot of my happy childhood memories and I think sub-consciously I always thought its something I could share with my kids one day. That's the thing about loving Disney films, it transcends generations, from the 1950's classics up to the present day. Even your Nan and Grandad know Disney films, it's just part of childhood nostalgia. 
So of course I had this dream of taking Elin one day, especially since I know they are geared up so well for disabled guests. This momentous moment happened in 2015 when we went to Disneyland Paris (Florida deffo not an option with Elin's hatred of travel and heat!) and we had a wonderful time. Elin's Daddy did not grow up with a huge love of Disney like I did (although he does love Buzz Lightyear haha) but it took all of half a day for any 'corporate money-grabbing' scepticism to disappear. Its the magic, it just sucks you in! So we had such a wonderful time that I said I didn't want to go back in case it wasn't as good and it spoiled my memories. Well that lasted just over two years then with the advent of an incredibly good health spell for Elin, we decided it might be time to go back. 
I was WAY calmer this time. In fairness Elin hadn't spent the week before we went in hospital so that did make things a little easier! 
The thing is, getting Elin anywhere with her dystonia can be a massive mission. Or not. Depending on the day and her mood. Getting Elin anywhere with her dystonia AND enough meds/nappies/tubes/feeding equipment etc etc can feel a bit like a "Mission:Impossible" to be honest. So as Elin's Daddy packs two T-shirts, one pair of shorts, some pants and some ginger biscuits (yes really. An absolute necessity apparently!) I am a slave to lists, baggage allowances, suitcase spaces and travel arrangements for weeks before. That's without the worry of accidentally breaking one of her epilepsy medication bottles en-route. Not an easy time to control my anxiety, but something I have to suck up and get on with if we want to go.
Reflecting on the way back this time (if you've been following my Instagram you will know we had the most incredible time but more importantly, Elin enjoyed every second which makes the mission completely worth it of course) I thought about just why it's such a big deal to me. I think it's because even just getting out there and back without any dramas feels like and incredible achievement. Seriously. I didn't forget anything vital, I managed to get everything into two cases plus hand luggage meaning Paul could wheel the cases and I could push Elin's chair (apart from hanging stuff on her chair you effectively only have one pair of hands to carry all the luggage which is why packing is so problematic), Elin was well the whole time we were there, there were no train delays (would have been a nightmare with Elins dystonia). It went as smoothly from start to finish as we ever could have hoped. So even all that means the holiday went well. To add into the mix that Elin actually visibly had the time of her life, so much so that we both welled up a fair few times each (ok, we both actually cried at least twice each), is the icing on the cake. It turns a great holiday into the best holiday ever. The only thing missing was Elin's beloved big sis, back at Uni for her second year, but once again we thanked the technology gods for face time and we didn't have to miss her too much!!
Elin wanted for nothing. She went on almost every ride that was available to children. Not to mention watching the street theatre, parades, musical shows (west-end standard but a lot shorter) and meeting characters (the actors are wonderful and talked to Elin beautifully, she was captivated). The French, it would seem are not quite so uptight about health and safety as they are here in the UK. If her chair wasn't able to go on a ride, they let us carry her on and sit with her. Joy!! This common sense attitude literally changed her experience into an amazing one. You've only got to look at her face of the 'Dumbo The Flying Elephant' ride to see what I mean. She was in heaven, therefore, so were we. 
For our part we were pretty exhausted coming home. The lifting gets to you after a day or two, in the absence of a bed/changing platform/bath at the correct height in the hotel room but also the lifting in and out of her chair for cuddles all day in the park if her dystonia played up a bit (thankfully it was for the most part entirely under control)Also,  there is still a kind of level of stress involved in taking Elin away, however swimmingly things go. This was evident in Paul's utter panic when Elin fell asleep during the parade (she rarely falls asleep in the day time). I was returning from the shop and could see the panic on his face- he said she was laughing one minute and the next minute he couldn't wake her. Between us we quickly worked out that yes, she had actually just fallen asleep! She was exhausted from all the fun and soon woke up again!! But Paul (who literally never usually panics) said his heart just dropped into his stomach because it suddenly hit home that we were in a foreign country and how vulnerable Elin actually is and in turn how vulnerable that made him feel in terms of if there had been an actual health emergency. The reality of our situation is never too far away.
So I love taking Elin to Disney because it feels like completing a massive mission successfully and achieving the once-impossible. It felt like a dream had come true when we walked through those gates and saw the iconic pink castle again . Just getting her there felt like a victory, we were on top of the world. I could take my daughter to the embodiment of my childhood imagination after all and not only could I take her but I could watch her having the time of her life just like everyone else. There was a time, when she was younger and pretty poorly that it felt impossible. But I guess it goes to show that dreams do come true after all, just like Disney would have us believe. In Disneyland Elin is truly equal to every other child because there's nothing they can do that she can't. Obviously her experience is different, but it's not less. 
Just like her. Different, but not less.
This was supposed to be our last visit, before she gets too big to lift. Somehow I don't think it will be.  The bubble of equality and happiness there is like a drug, once you've had it you want more! So until our next 'hit' Disneyland, au revoir......you really were the best :-)
Thanks for everything.



When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.

If your heart is in your dream
No request is too extreme
When you wish upon a star
as dreamers do.

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true.
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Wednesday, 23 August 2017

It's ok not to be ready..

On this parenting journey through Quadriplegic Cerebral Palsy, there are  a lot of things we have to face that we're not ready to. This started of course at Elin's birth with accepting the diagnosis, which we didn't want to.  It continued through accepting tube feeding as a permanent,  a kitchen full of medication and a spare room full of equipment. Accepting a different community, a different set of priorities. Accepting a set of four wheels where her Clarks 'First Steps' should have been. More recently accepting a hoist just to get her into a bath. Accepting that dystonia will regularly render us housebound. We've had to accept a future we really weren't willing to approach and lets face it, a different life entirely. We had no control over any of these things- for a committed control freak that's pretty hard going!!
But, there are one or two things we have been able to delay facing. Leaving our beautiful little cottage for one (we successfully argued the case against the council to have adaptions done here, buying us a few crucial more years). Sending Elin to respite (respite facilities near here are AMAZING but thanks to help from family this is something we've not yet had to consider in terms of her care) and moving her into her own room. Yep, that's right, Elin hasn't really slept in her own room for the past nine years. I have no strange earth-Mum organic childhood development philosophy about this, I'm far from a co-sleeping parent advocate,  in general terms I'm far more practical than I am molly-coddler (when I was pregnant I had grand plans of the baby being in their own room by six months at the latest and Elin's Daddy agreed), I love my sleep and my privacy. Yet somehow, here we were. Nine long years and no movement.
Believe me I know how ridiculous this sounds and in truth I'm a bit (quite a lot actually) embarrassed about it. If you're a friend or a member of my family THANK YOU for biting your tongue on this as you undoubtedly have done. I wasn't ready to hear whatever you might have said before this year. If you're a professional involved in Elins life and you're reading this, Im sorry!! I lied because I couldn't bare to admit that we had a downstairs room kitted out for her with a hoist, moveable bed etc and we were still carrying her upstairs to sleep in our room every night. But I wasn't ready and I'm not sorry for that part. Everything else in Elin's life has had to happen whether I like it or not from day one. Decisions about her health, future and provision are rarely my own as her Mum. This was my decision and for a long time I was happy with it.
I am up often several times a night. Elin regularly chokes in her sleep. She often needs middle of the night nappy changes due to being pump fed overnight and the sheer amount of liquid she is taking in. She almost always needs medicating halfway throughout the night too, since her brain doesn't naturally produce the sleep-aid Melatonin. I just didn't see the point in racing up and down stairs all through the night to do all this. Especially when I was teaching as well as being Elin's Mummy. I was just too exhausted to want to think about it. Then my friends son who also had Quad C.P passed away in his sleep and through our heartbreak we became even more jittery. I think it would have been weird if we hadn't. So just like that, twelve months turned into two years, then four, then six and suddenly we had a nine year old sleeping in our bedroom and I was unable to carry her downstairs in the morning anymore, relying on Paul do do the lifting.
Around this time I stopped being unable to face the prospect of Elin sleeping downstairs and us sleeping upstairs. I started to wonder if it was time, the set up seemed vaguely ridiculous. She had done so much growing between he ages of 8-9. Not only that but her health has been so brilliant, no seizures or hospital admissions for almost two years. Her 9th birthday really helped me focus on all of this. She's just growing up.  I ordered a video monitor system (fantastic- 'Hello baby' from Amazon) and took a deep breath.
Last night was the first night we put 'operation big-girl sleeps' into motion. It went brilliantly. Elin only got me up once. I'm not naive enough to think that this will be the case every night and I'll probably curse my decision one night in the not too distant future on my sixth descent down the stairs, but the fact is I felt ready. We both finally felt ready as parents and I think Elin is too (it's only the past two or three moths that she's stopped choking in the night for example, something we couldn't have coped with if she was out of our sight I don't think).
I'm not writing this post to justify the past nine years, because I don't think I need to-at the end of the day that's just how it had to be for us and its surprising what you get used to. I'm writing this post because I want to share its ok not to be ready sometimes.
That goes for all aspects of Motherhood I think though, special needs or not. It comes back to trusting your gut, not pressurising yourself into things that aren't right for you and not caring what everyone else thinks (ahhhh! the true holy grail of parenthood right there!!)
Paul and I did feel a little weird this morning, this definitely marks a new era for us and we can't deny that Elin is growing up in her own special little Elin way. But mostly we felt pretty happy and totally confident that we couldn't put off this change any longer. It felt right, so it was.
And I think that's probably a pretty good rule of thumb for most of my parenting decisions, which I shall remind myself about next time I'm beating myself up over some small decision or other. Honestly I will, I promise :-)

P.s Thanks for the messages about the blog (or lack thereof). I've lost my blogging mojo a bit lately (and also my wifi connection which doesn't help but that's another story) I hope my 'Bitesize blogs' on Instagram have made up a little for this and enabled you to follow Elin's Summer adventures (link on right hand sidebar)
xxxxxx


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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 kind of 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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