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

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

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

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

 💛💛💛

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.

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

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