Living with Cerebral Palsy 🍋🍋

Sunday, 24 November 2019

In Praise Of Relaxed Screenings


“Relaxed Screenings” or as they are sometimes called, “Autism Friendly” screenings at cinemas and theatres have been widely around, a quick google search tells me,  since about 2011 (although if you think about it, it kind of beggars belief that it took so long!) These screenings have subtle changes to the cinema or theatre environment, which means that people who have sensory difficulties have a more positive experience than they would in a traditional cinema setting. Changes include:
-Lights being kept at a low level
-Lower than usual sound levels
-No trailers or adverts-just the film
-Allowance for increased movements and noise.
These screenings haven’t been something we have always felt the need to bother with. Elin has historically been ok at the cinema and on the rare occasion we might have taken her to the theatre, enjoying the experiences without over stimulation. However as she has matured, we have discovered this not to be the case. The adverts and trailers (which these days seem INCREDIBLY loud-or am I just getting old???) upset her. They make her jump and the surround sound disorientates her. The noise triggers her dystonia and before the event has even started, she is struggling to focus.  The pitch black makes it hard to manage her physically and tube feeding or medicine administration is especially difficult.  Just recently, a new problem has reared its head for us. That is, that when Elin becomes over stimulated or over excited, she gets very, very noisy. She starts laughing so hard it can turn into squealing.  This is actually a lovely reaction and shows a high level of awareness, which is great. But, did I mention …its NOISY. This is problematic if it is prolonged, or regular throughout the showing, because it’s so distracting for other audience members.  Now, I’m all for allowing Elin to express her joy, of course I am. I will fight Elin’s right to equal experiences despite her disability to the death. But true equality has to be equality for all. So when Elin gets really, really, noisy for prolonged periods in a cinema I can start to feel uncomfortable. I don’t want to interrupt anyone’s fun. More importantly, I don’t want Elin to be seen as an annoyance or a problem. I also understand that these events are not just a special experience for us, it a special (and often expensive!) experience for all other families there too. I don’t believe in Elin’s right to enjoy herself at the expense of the enjoyment of others. It pains me to say it, but it just doesn't feel fair.
So after a particularly difficult visit to see “The Lion King” this Summer, where we ended up having to leave, due to little foghorn Drake, we decided that where possible we would only access relaxed performances from now on.  How lucky are we that this is an option for us now? True inclusion can mean I think, not lumping everyone together regardless of ability to allow them the ‘same’ experience, but providing tailored versions of that same experience in order to allow appropriate opportunities, choice and options.  Bravo to those venues around the country for realising this.
This weekend we have been to see the Disney film of the year and highly anticipated sequel “Frozen 2” . I was really excited because I had such good memories of the first one, Elin had loved it and it was six years ago when our trips out would more often be misses than hits, so it had meant a lot to have a successful trip out. We spent, like most families, the next few months listening to the soundtrack on repeat and Elin couldn’t get enough.  The great thing about Disney films are the musical numbers and advanced graphics. They are meaningful to Elin and tend to keep her engaged way more than any other kids films out here. I’m pleased to report our trip echoed that of our trip six years ago. She absolutely loved it and sat in her chair the whole way through the film, laughing loads. She didn’t just laugh at the film, she laughed at the other children audibly enjoying their experience too. When she began, as she was bound to, getting a little over excited, we didn’t feel any of the stress of previous performances that she might be distracting other people.  It didn’t matter.
By introducing these special screenings and making some simple changes to an ordinary format, the Odeon (and other participating venues, of which our personal experience extends to Chester's ‘Storyhouse’ theatre too) have given the opportunity for families like ours to have an extra-ordinary time. Thank you. Sometimes a small change can make a big difference.
"Frozen 1"  2013        vs         "Frozen 2" 2019

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Thursday, 31 October 2019

A magic celebration

I’ve blogged many times about how much I love Autumn. Part of the reason for that is because it contains Halloween. I have always loved Halloween, I’m not even sure why. Maybe it sprang from a childhood obsession with “The Worst Witch” (books and film equally) or maybe it’s because the decade I grew up in, the 1980’s, was when Halloween really started to take off as a ‘thing’ in this country and anything that came from America and was mentioned in my "Babysitter's Club" and "Judy Blume" books was by default, exciting.  By 'taking off as a thing' I don’t mean fancy costumes readily available in every supermarket, extravagant decorations everywhere you go and picking your own pumpkins in those stunningly instagrammable fields that every garden centre now boasts at this time of year. I mean making your own witches costume from a heavy duty bin bag, begging your Dad to whittle you a broomstick from a tree branch and getting a buzz from coming home in the dark after dancing up a sweat to “Thriller” and “Ghostbusters” at the Halloween disco in the school hall.  There is something tremendously nostalgic about Halloween for me and that’s before you factor in my morbid fascination with anything supernatural . Maybe I also love it because it coincides with the clocks changing, the advent of Winter and dark, cold nights, coal fires and an overall sense of cosiness the Scandinavians wholeheartedly embrace as a way of life called  ‘Hygge’ (perhaps I can blame my scandi paternal bloodline-my maiden name is Erlandson- for my adoration of Autumn and Winter?)
Like anything I adore, or get excited about, I want to share it with Elin. Like anything I want to share with Elin, I can’t. Not in the conventional sense of ways I see other parents enjoying with their children in any case. Trick or treat is meaningless to Elin. So is “The Worst Witch” and all the other things that make Halloween meaningful to me.
A couple of times, a few years ago, I tried to force my version of Halloween. It’s not until you are pushing a dystonic Elin through the cold damp streets trick or treating for things she can’t eat that you realise, with true horror, what you have always known. Elin’s experiences cannot be based on what you wish they could be, or what will make a cute photograph for the album. Her life experiences have to be based only on what is meaningful to her. Anything else is selfish, understandable-yes, well meaning- yes, but ultimately selfish. It’s a bitter pill to swallow (I still find watching other children experience common celebrations like Halloween in the regular way difficult. I don't expect that will ever go away) but since the very essence of parenting is sacrifice, it’s a no brainer. I am ashamed now, of the times over the years I may have forced experiences on her that she wasn’t going to enjoy, just so I could experience them as a Mum, but only time could bring this revelation to my door and only time could make me ready to accept it.  This epiphany is joining my list of 'things that have become easier to deal with' as the last eleven years have passed by.
Today, with Paul in London until tomorrow helping Elin’s big sister move into her new flat, Elin and I had an appropriately “Hygge” Halloween. We wrapped up and went for a crisp Autumnal walk before the sunshine disappeared. When we got home we blew up some light-up Halloween balloons to bat around (Elin finds balloons hilarious), we drew the curtains and played with our ghost-shaped fairy lights and glow in the dark glowsticks and bangles. We listened to Halloween music (thanks Amazon). We toasted marshmallows (Elin licked them and DEFINITELY enjoyed!), we cuddled up and watched the animated “Hotel Transylvania” together on the iPad and we read “Meg and Mog” before bed. It wasn’t what I had in mind when I imagined celebrating my love of Halloween with a pre-teen daughter.
But it was perfect.
As I flipped the calendar tonight I realised during all the naval gazing about Halloween today I had somehow managed to forget this now means we are in to November. This brings another celebration. Not for anyone else this time though, for us. The end of October marks four full years since Elin was admitted to hospital for anything.  Not one overnight stay since October 2015. Wow. I would have given my right arm for that when Elin was a baby. I never would have believed it was possible. So that, above the traditions and the costumes and the trick or treating and the pumpkin patches and what we do and don’t do, THAT, then, it turns out, is the true magic of our Halloween and we are so, so grateful for it.
Have a spooktacular time, folks.
xxxx
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Wednesday, 9 October 2019

Blissfully captured.

For mental health awareness day tomorrow, a little story of how sometimes you have to face what scares you, until it doesn't anymore (but only when you are ready)
These photographs sat in a drawer in the spare room for ten years. This was my first cuddle with Elin without tubes and wires, when she was still in ICU following her birth, but had finally come off the ventilator. I was 26 years old and petrified. She was still very, very poorly. Paul took them because he noticed the July sunlight was shining through her cot-side window and the amateur photographer in him realised it would make a nice shot. It was a proper camera with a film and we had to wait for these to be developed. That seems crazy now. But, I'm glad they weren't taken on an iPhone. I really treasure that memory, of the photo's being taken on that big camera with the flash. It felt, for the most fleeting of seconds, like we were a normal family.
However, for the longest time, I could not display these newborn pictures. I just could not look at them without remembering the utter horror and trauma of the moments before they were taken and the moments that followed, and continued to follow for months (years). I loved the photo's, but I hated them too. They represent such a juxtaposition of hope and despair, of elation and devastation, of love and fear, of grief and gratitude.
Then Elin turned ten and something in me changed. Ten years is a milestone. It's a long time to be hanging on to trauma, denying a happy memory for fear of unearthing a million unhappy ones. For a while now, things had been feeling so much better. Elin has been doing amazingly well. Horrendous memories were definitely fading. I began to volunteer on the Special Care Baby Unit where Elin had been born, through the neonatal charity "Bliss". I had been Chairperson of the charity attached to the unit, Cherish, for many years by now, but that rarely involved visiting the unit itself and almost only ever involved conversing with parents who had long since left the unit with a recovering baby. This volunteering was different, it was to consist of going to the unit weekly and speaking with parents who were once in my position, right at the start of their journey as parents, some with very sick babies. It's providing an understanding ear to them in a harrowing time and hopefully helping them through, just by being someone there who knows exactly how they feel and has come out the other side. When I did my training with Bliss, I wondered if I would be able to carry out the role effectively, without re-visiting my own terrible memories of the first few weeks of Elin's life and letting them consume me again. I wondered if being there, immersed in the stories of others might set my mental health recovery from what happened to Elin (and I am always still in recovery) back a little. But somehow deep down in my gut I knew I was ready and that it was the right time to take on something like this. I had an urge to support other parents by doing something I think I would have benefitted from at the time we were on the unit all those years ago (though it has to be said the support from the amazing nursing team at this time was incredible. I never got over how wise them seemed, how easily they could comfort me. Nurses by trade, unpaid counsellors on the side)
The result has been one of the most rewarding things I have done. I've been volunteering for almost twelve months now and I have loved it. I think I was worried I may be transported back to one of the most difficult periods of my life -a period where we realised life would never be the same again, a period that was the start of 11 years of trying to come to terms with her ultimate diagnosis- in trying to help other parents. In fact, I couldn't have been more wrong. It's been so fantastically positive an experience. It's hard to explain, but it has normalised our time on the unit for me. I have seen incredible, amazing parents go through unthinkable things in the past few months. They have never failed to astound me with their strength, not a single one. I have been utterly inspired by them. These things happen and they happen again and again. It's life and it's how we deal with it that counts, because what else is there? It isn't, and was never, just me. We are not alone. The feelings I had, which I had been so scared to re-visit in keeping the photo's in the drawer, have been echoed back to me scores of times over the past twelve months in my role. It brought me a clarity and sense of peace I never considered when I thought about volunteering.
After I had been visiting the unit for a while, and ten years after Elin's birth,  I came across these photo's when searching for something else. Suddenly, I was really cross with myself for hiding them away. I made a snap decision to frame them and put them on Elin's bedroom wall. Now I look at them every day, we look at them together. Not once have I felt my heart pounding, or my stomach sickening, or my palms getting sweaty. I just feel joy. It's blissful to feel freed of the negativity that I once attached to these photographs so lovingly captured by Elin's Daddy. It took a long time, but I understand now that I had to be ready. It turns out that facing my fears, actively putting myself back into the environment that initially held such difficult memories for me and hopefully providing a little support to those trying to heal themselves, has helped heal me a little too.
"Nothing in life is to be feared. It is only to be understood"
Marie Curie.

Mental Health Awareness Day October 10th 2019.

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Friday, 13 September 2019

Hello Goodbye

Happy Autumn! The "season of mists and mellow fruitfulness" is definitely my favourite time of year. I adore the beautiful leaves, the first coal fire, the roasted chestnuts, the shining conkers outside our door, the apples, the pumpkin picking, the fading sunlight, the chunky knits, the cosiness of it all. I love it. I think Autumn is also feels special to me because after years in the education system, my brain processes the year as September to September. So the start of this month almost feels like New Year when it rolls around. It feels like a time for fresh starts. Sometimes, it also feels like a time for goodbyes.
This month we have experienced one huge fresh start and one sad goodbye.
Yesterday we attended the funeral of Paul's Aunty Brenda. Depending on how long you have been reading this blog you may remember pictures and mentions of her. She was one of Paul's Mums sisters. The three Golden Girls. She was a second Mum to Paul as he grew up and left a lasting impression on him and in later years me, too. As Paul's mum had sadly passed away when I was pregnant, Brenda and younger sister Sylvia came to mean a lot to us as the matriarchs of the Woods/Drake family line. Brenda was unendingly kind, gentle, selfless and possessed that great vintage "scouse humour". Everyone who met her adored her. She in turn cared for everybody and in particular had a huge soft spot for children of any age and description. She loved Elin as she did all her great nieces and nephews and I believe Elin most certainly inherited her strength of character and resilient nature. At her funeral I was in awe of, though unsurprised by, the outpouring of love for her and the continuous tales of her good humour and huge heart. It was inspiring. As we were told in her Eulogy, perhaps when leaving that sad day behind us, the greatest debt we could pay to her memory was to try, where possible, to just be a little more 'Brenda'. It would certainly make the world a better, brighter, place.
May 2019 
Brenda (right) and Paul's other amazing Aunty, Sylvia (left)
As Brenda made the world a brighter place, so Elin continues to shine her light on those who surround her! I am SO PROUD of my sunshine girl this past fortnight. She has experienced a giant change, an enormous new start- that of beginning her new school. She has definitely been very 'Brenda' through this transition- serene, happy and taking absolutely everything in her stride without fuss. I'd like to say I'd been the same but instead I've been typically emotional about the whole thing. I just can't believe my baby is in Year 7!! Seeing Elin settle so happily at her new school thus far has provided the necessary antidote to my acute sentimentality though. Elin's New Year consists of meeting and creating a whole new school family and support network to enjoy over the next few years. She is so lucky. My New Year consists of quelling waves of grief and strange feelings of loss with the wonderful positives of the past fortnight and the knowledge that Elin is entering an amazing new chapter of her life which she is going to love.
As a final thought as we enter this open book of the 'next stage' in Elin's incredible life, it struck me last week just how many messages of support we had and wishes of good luck from friends before she started school. I have always known this love for Elin exists but big milestones in her life make it so much more apparent. She is one lucky girl. We are one lucky family. It brings it home to me that Elin is not the only one with an incredible support network surrounding her and I am eternally grateful for that. So going forward, my New Year's resolutions are that I am going to channel my inner bravery more often, take my lead from my girl, always focus on the positives and as much as I possibly can, just generally "be more Brenda".
Happy "New Year" folks
xxxxxx



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Thursday, 15 August 2019

Serendipity




Serendipity 

noun
  1. the occurrence and development of events by chance in a happy or beneficial way."a fortunate stroke of serendipity"
2 synonyms:
3 chance, happy chance, accident, happy accident, fluke; More

Years ago I remember someone telling me that the world of children with profound disabilities was a small one. I didn’t really understand at the time, but as the years have rolled past, more and more chance encounters with families like ours have managed to convince me this is true. Not least last year in Ibiza, when I bumped into a Mum with a beautiful little girl like Elin, who had been following this blog for years and who I’d previously exchanged many messages with!!! To meet them in ‘real life’ (in Ibiza!!!) was amazing. Sometimes it feels like an invisible serendipitous force is linking families like ours somehow, or at least groups of us, together. Like a gang. Or a family.
This week we have been on holiday- back to Anglesey (our favourite place blog readers will know) It has been a gorgeous week. Once again, Elin brought the sunshine with her. Even Wednesday, which was supposed to be horrific, was just a bit drizzly and windy. Elin sat in her chair amazingly, meaning we 
could really explore the island. Neither of us ever remember Elin having such a prolonged calm period-we were out for hours every day- including fairly good sleeping! It’s been a perfect week. 

Which brings me to serendipity.
On Tuesday we met a family on the beach, with a little boy, Sam, from Manchester, who was like Elin. We spotted one another immediately, as you tend to do when you recognise the tell tale shape of the special chair, the oxygen tank, the medicine bag. We had a lovely chat with Sam’s family, frantically exchanging garbled information as you tend to do when you discover a mirrored image of your own family (a rareity as you can imagine)Two days later, we met them again on an entirely different beach (one which we almost hadn’t stopped at) We had another chat. This was when we discovered Elin and Sam had been at Alder Hey together in 2008. Not only that but we had both befriended the same third family. The third family had an amazing little boy, Oscar, Elin’s first friend, whose family lived in a village in Wrexham too. Devastatingly,  Oscar went on to pass away the following year. We had all attended his funeral and all kept in touch with Oscars family to this day. 
I tried to wrap my head around the fact that this set of parents on the beach in Anglesey, had been equally enchanted by Oscar and his family as we had been, and had attended his funeral as we had, the first of our children’s friends we had ever had to say goodbye 
to. That we had this shared, achingly profound and crushing 
experience was crazy, and weird, and strangely comforting and sad all at once. 
Whilst we chewed this over some more and Sam’s family left the beach, our attention was drawn by a little boy digging a hole with his Grandma and Grandad. When it came time for them to leave, we must have caught the Grandma’s eye because she smiled at Elin and told us she used to be involved with a special riding centre for the disabled near Shrewsbury. I told her we used to go there, before we switched to a more local one, that Elin used to ride the mechanical horse in the grounds of a farmhouse when she was tiny. “Yes, that’s my house” she said. “You used to come to my house, then”. She thought she remembered us. I mean, WHAT?!? The woman who we had parked next to on a random beach in Anglesey owned the house and grounds where Elin used to go riding!! How do these head spinning coincidences occur? The universe is indeed a strange and serendipitous place. I have long believed Elin and her friends are extra ordinary, that they are linked, to each other, to the planets, to the earth, to the atmosphere and the sea and the stars in a way no ordinary people are. They transcend normality. They are, in the truest sense of the word, special. They are joined together with a shared experience none of us will ever really know about fully. They are shooting stars in the universe of all our lives. And how lucky we are to be within their orbits, watching them shine so brightly and so beautifully. 
“There are more things in heaven and earth Horacio, than are dreamt of in your philosophy” 
Hamlet Act 1 Sc 5. 
The world, of children with profound disabilities, is a small one. 
Ruth xx
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Thursday, 11 July 2019

The End of an Era

In a few short days,  Elin is leaving the class she has resided in for over eight years and in September, is moving to secondary school.
Someone once told me they thought we were really ‘lucky’ that Elin had a school she could go to. That there were schools ‘around’ that catered for children with her needs.
No.
Elin and her friends have a right to expect an education (a good education) just as much as any other child. Its not luck, it’s a legal requirement.
What IS lucky is that school happened to be Ysgol Y Canol. That, to me, was lucky. There was no choice for us back in 2011 when we were looking at schools. There was only one in the area which would come close to meeting her needs. I found this really difficult, because it was obviously not the school I had planned on her going to. She was supposed to be going to the school in our village, which we had naturally just always assumed our child would attend, which I had attended, which my Mum still worked at. It was all going to be so perfect, Mum would be there after school for her, or if she needed someone, and we could even take her down there on her bike when she was old enough.  Realising Elin was not going to attend this school after all was like a yet another punch to the gut, so before Elin even started school there were huge emotional connotations for me surrounding the subject.
Despite our teaching backgrounds, neither of us had any real experience with ALN schools/units. When we went to look around Ysgol Y Canol we didn’t know what to expect, I was really nervous.  I was acutely aware if we weren’t sure about it that we had very few other options, which added extra pressure to the situation.
However, regular blog readers will know how this story turned out.  From the moment we got through the door it was pretty clear this was not a school, it was a home.
Just as a home is not a home because of what it looks like, but instead who is inside it, so a school cannot in the end be measured by its facilities, but by the staff.  The staff at Elin’s school are her family and we are devastated to say goodbye. “As many hands build a house, so many hearts make a school”.  This is so true for Y Canol. The love there was palpable.
From that day when we arrived full of trepidation about handing over Elin to strangers for the first time ever, to her last emotional couple of weeks, Ysgol Y Canol has provided us with nothing but excellence, believing that nothing but excellence was what Elin and her friends were owed and deserved. When you have a child with complex needs, a good school can be life changing.  To the Y Canol staff-  you changed Elin’s life. You gave her something we couldn’t, you gave her independence, you gave her a meaningful experience each and every day outside of the family home. You taught her so much, showed us what she could achieve and, early on, how her life could be. Right from our first visit, we could see there was no room for sorrow in this school. Only celebration. Nobody commiserated us, nobody patronised Elin. We were made to feel like we belonged there. For the first tile in Elin’s life our family experience was a normal one. You gave us as parents the most incredible understanding, support and care over the years too. She was two when she came to you, we were still traumatised from our lives being turned upside down following her birth. You helped to heal our family, you helped to mend two broken hearts. School quickly became something I could cross off my list of things to feel sad about.  It was a big one to be able to cross off.  I can never fully express my gratitude for this. School has been the constant anchor in the years of stormy seas we have weathered together as a family. You grounded us.
Now Elin is leaving for secondary school and we can hardly believe it. She is so ready for new challenges and has a fab secondary school to go to. We are excited about the new chapter in her life. But Elin leaves a tiny piece of herself behind at Y Canol- a piece of her heart, and we leave a piece of ours too.
We will miss you beyond measure and we will never, ever forget what you did for Elin and for us.
Thank you all, for everything.
Ruth xx
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Tuesday, 11 June 2019

Eleven


Eleven years

Of PTSD
Of sleep deprivation
Of appointments
Of medications
Of feeds
Of therapies
Of fear
Of worry
Of isolation 
Of heartache
Of disbelief

Eleven years 

Of miracles 
Of gratitude
Of amazement
Of wonder
Of pride
Of smiles
Of laughter
Of inclusion
Of happiness
Of believing

Of love.

Eleven years I could not change because to change would to be without you. 

Show me the next eleven years, I’m ready. You are my hero, Elin.
Mum x
 💛💛💛
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Sunday, 24 March 2019

Special

We're going to be in a book!!
I'll start at the very beginning (it's a very good place to start). A couple of years ago I received an email from an Australian journalist, Melanie Dimmit.  She explained that she was writing a book, which would collate stories of SEND parents to help new parents of children with learning and/or developmental difficulties. After her son Arlo was diagnosed with Quadriplegic Cerebral Palsy, she became acutely aware that there was no reading material out there around coping strategies and positive thinking for parents grappling with life-changing news. In a nutshell, Melanie said her book hoped to become something parents would turn to in order to feel better and access strategies (that have worked for other parents) to redirect negative thinking around their child's disability. She had, in googling the subject, come across my blog and was inviting me to contribute to the book with my own words of advice for new parents in my position. 
Wow. I was SO pleased! This has been a bugbear of mine for all time. When you are pregnant, there is a plethora of books you look at for after the baby is born. You buy a couple and excitedly put them on your bookshelf, maybe even in the baby's room. These will help you with ALL SORTS of things!! Things have moved on from the days of Dr Spock and they are even really trendy and funny now with advice about when you can start drinking red wine again and hilarious match stick pictures depicting frazzled life with a new born. These types of books are written by everything from well known celebrities to ordinary Mums with a way with words. They cover every topic from breast vs bottle to weaning, right up to potty training and everything in between.
These books, of course, were worse than useless to me when I got MY baby home. Not a word meant anything to me or our situation, they may as well have been written in Chinese. Social media groups were not a 'thing' then either. The internet was nowhere near, 11 years ago, what it is now in terms of the knowledge we have at our fingertips and the connections we can make. Neither could I turn to my other 'Mum friends' for advice. They weren't just in a different world to me they were orbiting a whole other universe.
So, I have often wondered why there couldn't be a book out there for parents like me. Not even necessarily new parents, as some children do not receive a diagnosis until they are older. Just any parent really who had the rug pulled from under them, who'd had their life turned upside down and with no idea what to do, how to feel or what to think. Melanie had obviously, after the birth of her son, thought the same. Being clearly much smarter and organised than me, she had actually managed to begin to put one together. I of course agreed to be interviewed by her, and then forgot about it completely. 
This weekend Melanie got back in touch. Her book which she has titled "Special: Antidotes to the obsessions that come with your child's disability" is going to be published by Venture Press in Australia and New Zealand in September, available on Amazon. She is hoping that following this, it will be published further afield. The blurb reads "Special is an uplifting, candid companion for parents in the early stages of navigating their child's disability. Combining more than 50 interviews with parents to children with wide-ranging disabilities and professional input from psychologists, researchers and specialists, it hopes to soothe and surprise very stressed and sad people"  So I am totally honoured to be included, albeit in a very small way :-) It represents a pleasing "full circle" moment for me. From those dark days when I had to angrily shove my 'baby books' into the shed because I could no longer look at them, (such was the way they seemed to almost mockingly represent a path I agonisingly never got to travel) right up to receiving Melanie's message this weekend and hoping that maybe my words could give some small comfort to another Mummy or Daddy throwing daggers at the bookshelf in the Nursery. What a circle we have followed, what a path we DID end up travelling. 
How special. 
Hope you've had a great weekend, folks.
Ruth xxx
For more information, follow @the_special_book on Instagram.

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Friday, 1 March 2019

Angel of Anglesey

Well February half term brought two surprises, one extremely wonderful and unexpected break and one bone achingly sad piece of news. These two surprises provided a contrast of emotion so complete this week that I found it quite overwhelming. Deep sorrow flanked by deep joy, or was the joy so potent because it was so infused by a sense of gratitude, a feeling that once again we find ourselves in the amazing position of being able to enjoy such quality time with Elin in the face of the devastation of another family we know?!? Someone once said to me you can’t feel total happiness until you have faced total despair. I would say that is a true statement. Certainly our emotions this week were all the more heightened for knowing, always, just how blessed we were to be able to experience such a lovely half term with our girl. We will never stop taking this position for granted.
So we went to an utterly gorgeous holiday home in Anglesey (thanks to lovely friends of my Mums!!) where we were already lucky enough to stay last October. Crazily I hadn't been there since I was way too small to remember prior to this! Never in a million years did we dream when we booked to stay in the stunning, accessible beach front home that the weather would be more typical of Miami than Wales in February. I might tweet my photos to Donald Trump. If global warming  doesn’t exist perhaps he can offer me an alternative explanation for the unnervingly incredible weather!  Feeling horrendous about our poor dying planet doesn’t have to stop you enjoying the sun though, right? The two are not mutually exclusive (are they!?!!!) So we enjoyed it! I think it’s fair to say it was just what we needed. 
There is little in this world so calming and able to give perspective so brilliantly as gazing out at the sun- soaked sea. It just makes you think everything is going to be alright. 
Even better than the weather was Elin’s mood. Neither of us can remember such a successful break from start to finish including all sitting and all car journeys. She has been outstanding. We thought last time we visited that she loved Anglesey, now we know for sure. The beautiful open plan beach house which is full of light, the salty air, the sound of the sea, the sunshine- the combination- who knows? Something about this place agrees with Elin. Can’t say I blame her. We are already booked to return twice this year and hopefully in the future too. I think we found our home-away-from-home happy place. When Elin is happy, we are overjoyed.
So as you can see from the photos, Elin really did have the best time. We didn't do too much! We walked (rolled), we talked, we found some lovely little cafe's, we sat on the beach (even though we weren't dressed for it!), we gave her lots of cuddles. We even ate good tapas. In Anglesey! Who knew. Everything and anything delighted Elin this week. She was smiling and laughing from the moment she opened her eyes to the moment she closed them at bedtime. It was joyful, but as I've said, never not tinged with a certain sadness. I thank god that Elin knows nothing of this sadness, nor of any sadness and never will. It is the one part of her condition that I can honestly say I am glad of. Elin has the "Eternal sunshine of the spotless mind" and boy, does she deserve to.
When trying to process impossibly sad news all we can do once again is take our lead from Elin and face negatives with positives, keep strong in the face of adversity, remember all the good things and acknowledge that we will never forget a beautiful angel with a truly beautiful soul and what we have all learned from being touched by that soul, as beautifully as the sunrise touches the sea-stunningly, wholly, breathtakingly- but far, far too briefly.

Take care everyone
Ruth  x

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Saturday, 26 January 2019

Smile

Today, there was a rainbow outside Elin's window. It was really beautiful. It made me cry. I cried because I wanted to share it's beauty with Elin and I couldn't.  She can't see that far away and she can't understand my descriptions. For Christmas she had a rainbow projector light which creates a lovely arc of a prism of colours across her bed. I was thrilled with it because I thought finally, she can see a rainbow. But today it doesn't feel like enough. Today everything feels a little dark, a little heavy.  I want her to see the real thing, in nature,  not something powered by batteries, as she sits as patient, serene and as good-humoured as ever in the relative prison of her bedroom. It made my heart ache.
Today is not just about the rainbow. Today is the end of a long, miserable mid-January week. It has also been a week of unhappy anniversaries. 8 years ago this week, Elin lost her gorgeous friend, Harvey, whose photo sits in Elin's room and who we still miss and always will. Also this week, Elin's cosmic twin, Ellie, should have been celebrating her 8th birthday, but she is forever six years old. In addition, on Wednesday, the world said goodbye to another old school friend of Elin's. An inspiringly strong, cheeky, joyful, clever young lady. Today, I think, is about all of that.
When you have a child who is severely disabled and/or described as life limited, there is a lot to process. I think the entirety of this blog is testament to this. None of it is easy to digest, it takes years. You never get over it, you learn to negotiate your new normal. Part of the new normal is that you suddenly realise somewhere along the way that children you get to know and love will pass away. Families you share each joy and sadness with on this journey will go through the worst grief imaginable in front of your eyes. You have to come to terms with the fact that one day, this could be your child and your family.
Since Elin was born the children we have lost from our lives has reached double figures. Nothing and nobody prepares you for this. In truth, it's probably something you just can't 'prepare' for. The strength of the families utterly humbles you, the legacy of love the children leave behind floors you. The outpouring of kindness and support to these families inspires you, the reality of the hole that is left devastates you. Sometimes, it all feels too much to bear. There is just too much sadness, it starts to get impossible to process, to make any sense of. It never gets easier (and why should it?) in a way, it gets harder. With the passing of each of the eleven children that have left our lives so far, the world just seems more cruel, more unfair and more terrifying.
So how do you deal with it?
I suppose you navigate the sadness by thinking of all the wonderful memories you have of these amazing kids. The memories you know will stay with you forever, the ones that will, when the initial shock and grief has worn off a little, make you smile. Isn't that the only way anyone can make grief bearable at all? Also by looking to Elin. She, as ever, teaches us so much. As I tried to pull myself together after the rainbow set me off today, she laughed. She laughed A LOT. It was as though she was trying to tell me she didn't care about seeing the rainbow. In the end I started laughing too. As ever, we take our lead from her, our sunshine girl, because she shows us the way. Sometimes, there is nothing else left to do but smile, even if you have to have a really good cry first. Smile, remember the good things, pick yourself up and just try to get on with it. Today, I'm smiling for you, Paige. There were so many good things in your life and you gave so much joy to everyone who knew you. We will never forget you.  If I know you at all then I know that somewhere you are smiling too.
Have a good weekend, folks.
Ruth x


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Saturday, 5 January 2019

Goodbye 2018

Hi everyone! To start where I left off, we LOVED The Wizard of Oz at Storyhouse, Chester! After the Lanterns at the zoo it really kicked off Christmas in a beautiful way for us- it was just magical to see Elin's reaction to what was happening on stage, she adored it! Her favourite was the Wicked Witch- she laughed and laughed every time she was on which was very cute and very typical of Elin to decide she liked the baddy the best!! She spent a bit of it in her chair and then the rest of it on Daddy's knee. When the characters came running through the audience at one point, the Cowardly Lion stroked her face and her response was amazing, I just wish I'd had my camera out!! She really, really enjoyed herself and even got to meet Toto afterwards! It meant such a lot to me to share this experience with her and it will be one of my fondest memories of this holiday period for sure.
I hope you all had yourselves a merry little Christmas! Ours was lovely, if not a little blighted by illness- not of epic proportion thank god - but enough to keep us indoors repeatedly coughing and sneezing for a few days. Elin, mercifully, was the least affected presumably having already had it a couple of weeks ago, but chose Christmas day to be at her worst poor thing. On the bright side the three hour nap she decided she needed after the exhaustion of opening her presents coincided with Christmas dinner which was fairly handy for us bless her!! Paul pulled it out of the bag for the millionth year on the trot and we had a gorgeous meal with my Mum, Nan and Grandad    (who have made the move into a residential care home this year but were still super keen to spend the day at our cosy little Christmassy cottage as usual)
                                               
(My absolute legend of a Grandad Ted)

So given the illness that was descending on Christmas day I think Christmas Eve was actually the better day for Elin, to be honest it's my favourite day of the holidays anyway!! We went to watch the children's Nativity in our local church, which is a beautiful building and one I only frequent once a year on Christmas Eve (what do you mean christianity is for life, not just for Christmas?!?!)  but regardless of my terrible yuletide hypocrisy it's an absolute must for us as Elin just loves the tree, lights and singing.  There is also something very lovely on a spiritual level about being there somehow- we went so often with our primary school just over the road as kids that it does hold some lovely memories (and some not so lovely memories like when I was cruelly denied the role of 'Mary'- see previous post!) Anyway this year was no exception and Elin had a lovely, lovely time. She basically laughed all the way through!
It was then time to get some new jim-jams on and wait for Santa to arrive :-)
After Christmas Day Elin perked up a little bit and enjoyed spending Boxing Day day with big sister and family. Elin can't get enough of Caitlin so this was like heaven to her! She was one happy girl!
Elin just dressed super-casual for boxing Day. Ha!
What followed was a few days of all of us, but especially Paul, being pretty wiped with the Christmas lurgi that had been doing the rounds. It's a shame I contracted this strain and not the tummy bug that was also spreading like wildfire as I could do with a helping hand fitting back into my jeans, but I guess on the whole I really wouldn't want Elin catching that so thank heaven for small mercies.
Those days passed in a bit of a fug of hot toddies and Netflix so it was very welcome to get out just before the new year for a nice walk by the Llangollen canal. Elin was obviously so pleased to be out she forgot to be dystonic, so all in all it was a massively successful outing!!!
 Elin enjoyed playing with her new toy and watching us take the tree down when we got home.
On new Year's Day we happily  managed to get to Yorkshire to visit Elin's big brother Gareth and his wife Marianne who were also hosting Elin's big sister Beth and her partner Adam, plus two lovely friends, plus four out of six of the grandchildren!! A very happy visit and Elin thrived on the company of the little ones, as she always does! Miraculously, she had still not remembered to be dystonic by this point so the journey there was pretty pleasing too! 
Actual real footage of Elin sitting nicely in the back of a car!
 He ain't heavy.......he's my brother!
Gruff proudly enjoyed showing Elin his Dinosaur jigsaw!
Baby wrestling!
Taid grappling with 3 out of 6 grandchildren (Agnes, Bobbie and Ivy)

As if that wasn't lovely enough, the very next day when safely ensconced back at the cottage we had a wonderful surprise visit from my Uni friends Claire and Michael who were travelling down from Edinburgh to see Claire's Mum in Liverpool. When we had our awesome Edinburgh visit in the Summer, Claire and Michael were on holiday with their boys Caleb and Archie and it was my only regret that we missed them! So it was lovely to see them and introduce their children to Elin- we have seen each other a lot over the years but never managed to get the kids all together, so this was super special and a lovely treasured memory with which to begin 2019.
We will round off the holidays tomorrow by seeing Pauls brother and his wife and also his cousin and family who are visiting from Australia- so more children for Elin to play with! We have obviously also enjoyed the company of my family over Christmas too (I think I see them too often to remember getting photos oops!) and plenty of other special friends who mean a lot to us and to Elin. I hope this lovely family/friends time is a sign that the year will progress as nicely as it has started for team Drake and more importantly for Elin (I'm not sorry to see the back of 2018 and am really looking forward to starting a fresh new year) She has, of course, been spoiled rotten by everyone but not just with presents- with time and lovely thoughts and good wishes too. Friends and family mean the world to us and are what sees us through the hard times (like today, when Elin remembered about her dystonia at the worst possible time but I'm not blogging about it because you know,  POSITIVITY and all that!!) 
So truly, thanks for the love, folks. It's all you need.
Happy New Year. Here's to 2019.
Ruth xx


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