Mary Christmas!!!!

I can't quite believe it's that time of year again!! Merry Christmas, everyone! I have always loved Christmas but it's fair to say last year was probably one of the worst Christmases ever for many different reasons :-( We sort of stumbled through it and I survived on box sets (namely "Feud: Betty and Joan"- classic Hollywood camp glamour) and copious amounts of Bailey's. Fortunately none of that was anything to do with Elin and whilst Christmas 2017 set a bit of a precedent for some tough times in 2018, we have also been blessed again with an amazing year of good health for our girl. 

At the beginning of December though, Elin had an unheard-of week off school when she came down with what was essentially just a bad cold. Unfortunately it set of a bad pattern of dystonia which we had a bit of trouble controlling. Thankfully the dystonic cycles stopped just as quickly as they and started (just when I thought I was starting to lose my mind having to watch Elin go through it and just when we thought we may have to consider a dreaded hospital admission). Nothing like a bit of a fright with Elin's health to remind you how lucky you've been recently!!! Anyway her speedy recovery meant that Elin was back in school when the week was up, happily in time to rehearse for her final primary school Christmas concert.

You can imagine how we felt that Elin was undertaking her Year 6 school play. This is a school year of 'lasts' for Elin (last school photo, last visit to Santa's Grotto, last class party etc etc) and as I've previously mentioned I'm finding it difficult! However, I'm really trying to keep in mind that next year, her first year of secondary school, will be a year of 'firsts' and that is pretty exciting I reckon. So back to the play, the magnitude of which is difficult to describe. As parents of a child with PMLD we crave 'normal' parental experiences to enjoy because quite often they are few and far between. I've blogged so often in the past about what Elin's school Christingle and plays meant to us, I don't think I need to repeat myself again here- in a nutshell though, it's just so very emotional because ultimately it's the end of the year and as parents we are sitting there again, all feeling the same, thinking about our own personal journey's with our super-special children and also all celebrating how amazing they all are collectively. This is huge for us and difficult to articulate, especially after losing two beautiful little friends of Elin's since this time last year. The Christmas show is not only special because its such a joyous experience for us as parents of children with PMLD, but because it's reflective, too. That is the nature of the lives we now lead. 

Suffice to say we honestly didn't mind what role Elin got this year (previous gorgeous years have included a sheep, a penguin, an angel, a cowgirl and the star of Bethlehem!) But lets not mess about. Everyone knows in primary school life, the part of Mary is basically the 'King Lear at the RSC' of Nativity roles. It was a role that escaped me as a child and I'm still bitter to this day (I'm not kidding- Emma Bruce if you're reading this you robbed me!!)  Imagine our delight then, that following in the end-of-career footsteps of all the theatrical giants such as John Gielgud/Laurence Olivier/ Ian Mckellen et al - Elin would be ending her own 'run' of her whole school career at Ysgol Y Canol by playing Mary :-) So in other words, she was the Glenda Jackson of the show!!!

In a lovely parallel, Elin's little friends Dafydd, who joined the school at the same time as her and will be leaving for secondary school alongside her, played Joseph. As they entered to the song "Fools Rush In" by Elvis and then danced together (courtesy of their fab support workers and some nifty chair-action) there wasn't a dry eye in the house. Well, not a dry eye in the family, certainly!!! (Big sister Caitlin had very happily made it home from London in time to catch it!!) I was so thankful that Elin was in such a good place this week (she has been amazing) as we got to see her really enjoying her time on stage and we now get to treasure that memory for ever. I'm sure 'big school' will continue with school plays and Elin will get to flex her acting muscles again but it was lovely for her to 'exit stage left' on such a beautiful note, in a beautifully delivered show which focused on each and every one of her equally beautiful friends, with her own little school family surrounding her. 

Elin's boyfriend, Llew, you will notice, was a cow!!! The cutest little cow EVER!! (Photo published with kind permission from Dafydd and Llew's families)

Well as you can imagine this put us in the mood for festive cheer and we were lucky enough to have a wonderful experience last night again at 'Chester Zoo Lanterns'. It was simply quite stunning. The best year by far in terms of the lanterns and puppets. I LOVED that the interaction was back this year after a bit of a disappointing year last year. As the staff operated giant, lit up puppets or were dressed up, it meant that they could interact so much with Elin and she laughed from start to finish. She also sat better than she ever has done- not a whiff of the dreaded dystonia. It was, for big kids like us, magical and so gorgeous that Elin was able to get so much enjoyment from it. Some truly lovely memories were made there last night that we will never forget. 

African Plains

Elin leading the way with her special pink lantern

Giant Butterfly puppet was stunning- the operator was kind enough to flap its wings for Elin a lot which is why she is smiling here :-)

The entrance 

A giant racing snail! This reminded us of 'The Neverending Story'!

 The Giraffe puppet was my favourite- even though it got so close we were picking Giraffe eyelashes out of Elin's mouth for ages afterwards!!!!

 The Emu puppet nibbled Elin's hand!! Kept expecting to see Rod Hull ...

 We aren't sure exactly what these were but they were beautiful!!!! 

Elin in Wonderland!!!! Eat Me/ Drink Me?!?!

 A very funny White Rabbit!!!!

 This was a cheeky squirrel puppet who jumped all over Elin thanks to it's lovely operator! I loved that they took the time with her to really let her take it all in!! 

 Tunnel of lights!!!!!!

 These were kind of "Ombres Chinoises" rotating lanterns with forest silhouettes, lining one of the paths and they were just beautiful.

 What's a Christmas experience without a snow machine?!?!!!!!!!!

So as you can see we had a ball, we were doubly lucky that there wasn't a drop of rain the whole time we were there especially given the day before and what the weather is doing today!!!! I highly recommend a visit for any children like Elin and it goes without saying any children (or adults!) in general! There may even be a few tickets left before Christmas :-)
In between these two lovely events we even managed to squeeze in our traditional Drake-family snuggle-on-the-sofa Christmas film afternoon! I can highly recommend "The Chrismas Chronicles" on Netflix for slightly cheesy but heart-warming festive fun!!!

There are four days left to go and we have one more treat coming up- we're off to see the Wizard!!! Tomorrow afternoon we will be taking Elin to the 'relaxed' performance of "The Wizard of Oz" at Storyhouse, Chester. Regular blog readers will know it's my favourite children's film of all time. I've had a love/hate relationship with stage adaptations because of this (umm - how would you EVER replace Judy Garland?!?? Its an impossible task) but I'm sure Storyhouse will do a great job. I've been volunteering at Chester's Storyhouse for fourteen months now and I just love the place- they can rarely do wrong in my book!! More than anything I just want Elin to enjoy it and I'd be lying if I didn't say I was getting a huge buzz out of taking her to see it, again a "normal" experience I hoped I'd have with my kids one day. Taking them to see "The Wizard of Oz". Well now I get to do just that. HOW amazing is it that most theatres these days have relaxed performances? I count our blessings each day that we live in an ever inclusive and understanding world. I will really try to update the blog when we have seen it but if I don't get chance prior to the big day I certainly will afterwards, promise.

In the meantime, wishing all you amazing blog supporters a wonderful holiday!! We are dispensing with tradition slightly for a change this year and staying in Wales for the festive period, which brings some lovely positives and some really sad negatives but I guess, at Christmas, sometimes you just have to admit ..

There's no place like home.

Merry Christmas, folks.

Ruth xx

A Manual For Heartache

                                                    

Years ago I read an article about a condition which is prevalent in parents of severely disabled children, 'Chronic Sorrow Syndrome' , which really resonated with me.

Chronic Sorrow is the presence of recurring intense feelings of grief in the lives of parents or caregivers with children who have chronic health conditions. It runs alongside your everyday life, you may not be fully aware it's there a lot of the time. It’s like a virus running alongside a programme on your computer. It’s each time you have to attend yet another medical appointment, its each time you watch your child struggle or worse lie in a hospital bed for days, each time a friends child reaches a milestone your child never will. Its seeing children the same age as yours in the street and feeling the massive chest blow of comparison. Its filling in endless forms, its finding more space in the house for more specialist equipment, its ordering the nutritional liquid feed which is the only thing keeping your child from starvation, ordering repeat medication at a rate of knots, homing specialist syringes and feeding equipment in the kitchen. It's selling your beloved car and getting a mobility car. It's having tracking hoists running along your ceilings. It’s looking for a new house when you never want to leave the place you call home. It's seeing nothing but a black hole of uncertainty past education where University and adult life would have been. It’s a calendar so full of appointments you can no longer read the dates. It's watching Elin suffer when her dystonia takes hold. It's saying goodbye, as we have had to do again this week, to another beautiful little friend of Elin's and watching amazing parents you have befriended in your joint despair having to cope with the very worst possible case scenario imaginable. It’s having to face the thought of your own child’s death. It's a never-ending oppressive thoughts that can sometimes get the better of you.

My friend Anna bought a book for me recently that has helped me to see this kind of 'chronic sorrow' grieving for what it is and which provides advice on how to deal with bereavement of any kind, as well as touching on different kinds of  anxiety disorders and depression. 'A Manual For Heartache' by Cathy Rentzenbrink focuses on dealing with loss and grief and the ensuing feelings of anxiety and depression that sometimes never go away after experiencing a life changing incident. The author's 19 year old brother was involved in a car accident when she was 17, but lived on life support for the next eight years before he died.  Her first book 'The last Act of Love' which I haven't yet read, charts this part of the story and then this book  describes how the author has subsequently dealt with what happened and forged a life in the wake of her devastation.

I would recommend this book for anyone dealing with any kind of grief or loss, or tragic incident, however long ago in your life it occurred. Mostly what she writes is common sense but there is something very comforting in reading what you know to be true written down in a simplistic, logical way by someone else who has been through something unspeakable. The writing comes from a place of bleakness, but turns into a tender appreciation of life’s beauty.

At one point she thinks of Nancy Mitford saying that though life is often dull and sometimes sad, there are currants in the cake. “Look for the currants.” Ultimately, we might never fix our broken hearts, but we can still live, and our hearts can grow and appreciate life’s wonder. That is the feeling the reader is left with. 

I found this book comforting for many reasons. I'm not sure how useful it would be in the immediate aftermath of something horrendous, where even the suggestion that a book could help you get through it would probably seem laughable. But for me, I think I really would have benefitted from reading it in the early years following Elin's birth, during my grieving process for the daughter that was never born and whilst I was trying to negotiate what I now understand to have been pretty severe but undiagnosed (largely because I wouldn't talk to anyone about it) Post Traumatic Stress Disorder whilst trying to care for a very sick baby.

Grief is such a strange beast isn't it. It is almost entirely universal but affects everyone so differently. No one-way of dealing with grief is correct, but I was glad to discover that the classic 'five stages of grief' are no longer really being referred to in psychological circles, since the more modern realisation that grief is a fluid, chaotic crazy mixed bag of emotions that sometimes never actually ends.  Thats good, it means anyone suffering does not have to feel like it is time they 'moved on' or 'were over it'. Sometimes we just have to learn to live with what has happened to us and accept we will never quite be the same. 

Obviously I am a "look for the currents" kind of person.  Or at least I am now, perhaps less so in the immediate wake of what happened to Elin. It takes a long time to come to the conclusion that you can't change your loss and so the only way forward is to accept it. But very occasionally, even after all this time, the loss will resurface and can be almost as ferocious as it was initially. Apparently this is common and known as a 'second drowning'. I think I have experienced this once or twice in the past nine years. The times when you are struck dumb by the magnitude of what happened and it's a struggle to get out of bed. The way your heart aches for the child you almost had and then aches with guilt for the betrayal of Elin as she is now by feeling that way. 

Both the article on Chronic Sorrow and the book have helped to re-focus my attention on managing my thought processes lately. They make you realise it's not just you, it never was and it never will be.  The phrase "Do not ask 'why me?' but rather 'why not me?' " is a simplistic but effective way of thinking during black moments I think. As I grow older, so many of my friends confess suffering from anxiety or depression or, PTSD or Post Natal Depression or even just ongoing worry about things which they can't control. I am glad we are able to openly talk about this stuff, as we may not have been years ago. So I share this information in the hope that we can all, whether navigating tragedy or not, somehow take back a little bit of control for ourselves by not being ashamed of looking after our mental health the way we would our physical health. We all know it's just as important. 

As the author of 'A Manual For Heartache' writes 'Something that always consoles me, that never fails to throw a chink of light into a dark day, is remembering that others have walked this path before me. Even as your heart breaks and aches and you can't imagine how you will ever feel better, you can know one thing for certain. You are not alone"

Such a simple yet powerful and important message.

Xxxx

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

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

Everything will be ok.

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

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

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

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

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

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

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

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

It will be kind of wonderful.

      Happy Birthday Elin 

     xxxxxxxxx