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Living with Cerebral Palsy 🍋🍋

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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