Elin's Christmas Diary

Christmas Eve and Elin's Daddy just had to get her a decoration for the tree. I think he excelled himself this year! It's funny how even when Chistmas gets a little topsy-turvy some traditions just have to be carried out no matter what. Elin and I also felt strongly that we had to wear brand new Pyjamas on Christmas Eve too and for the second year running they were special Alder Hey charity ones. Last year's stripes made way for this year's spots. If you've not seen the 'Get Spotted For Alder Hey' campaign it's worth looking up and this year that's where our Christmas card money went.  A very worthy cause and a big thank you to Elin's Aunty Karen who works at Alder Hey and buys us our Christmas Eve set each year :-)
Christmas Day was slightly topsy-turvy this year because Elin's Great-Nanny was in hospital so when we would normally all be having lunch, we were visiting her on a ward instead and then having Elin's Great-Grandad over for Turkey sarnies. Elin took it all in her stride and was as good as gold with all the changes to routine .This meant eating Christmas dinner at night which actually turned out to be a nice change. As usual Elin was totally spoiled and actually had even more time than normal to open her presents since we weren't eating at lunch time. She had a 'Big Mack' Communication Aid Switch, Fish Tank, Portable DVD player and some Wireless Headphones for listening to her music with no outside sound from Santa. The rest of her ridiculous hall from our wonderful, overly generous family and friends included Moana goodies, P.J's, a giant Santa balloon, new clothes, C.D's, books, a new rucksack, special lights, a unicorn cape, a foot spa,  and a million other things. She was such a lucky girl. Of course she loved the tearing sound of the wrapping paper best :-)

The build up to Christmas was also a little topsy-turvy this year. If you read the blog regularly you will know that a little classmate of Elin's passed away the week before Christmas. This made for a very strange few days as we contemplated what her family were going through. These things are wrong at any time of year but at Christmas it seemed doubly cruel and incomprehensible. Due to the sad turn of events Elin's traditional school Christingle was unable to go ahead, but we did get to one in our village church on Christmas Eve which we attend each year. Despite not being in any way religious we do try and take Elin to this service, she simply adores the lights and carols, and so we thought of her beautiful little Christmas Angel classmate when the lights went out and of Ellie who we lost in September, and of Tobias who we lost earlier in the year and their families spending their first Christmas without their children. Unthinkable. We held Elin extra tight and felt lucky as we always do that we still have that option.

One positive in that strange, incongruous build up to Christmas was our becoming-traditional visit to the Chester Zoo Lanterns. This is a beautiful display of lights and lanterns in many different forms but mainly animals of course! This year Elin was dystonic so sitting in her chair was not as enjoyable for her but she still really enjoyed it and so did we. I would say that it wasn't quite as good as last year, there was a different company in charge and there weren't as many interactive displays or puppets/moving animatronics (which were both mine and Elin's favourite parts last year!) but still for the money it remained a lovely Christmas treat.

So after the excitement of Christmas day was over we went to London to visit the Drake family for Drake-mass mark two!! Unfortunately Elin remains dystonic and although she was incredibly happy and calm whilst we were down there the journey to and from London was not an easy one at all and one which Christmas traffic definitely didn't help. It has really started to become apparent to me that being anywhere but our own home for any length of time with Elin has started to become a real big deal. In travelling terms because of the dystonia even just getting her in and out of the car at the service station was hard going . Then, not having hoists and level changing platforms or step-free access/wet room etc is much harder than it used to be. I ambitiously had her on the floor a few times and getting up from that position with her has definitely taken it's toll even after a couple of days. Since our family is so huge this makes me worry about what this means for future get-togethers as she gets longer and heavier at a rate of knots, or so it seems lately. I don't like change at all but I think 2018 might signal a pretty seismic shift in our world. Elin will be turning 10 and I don't think we can tote her around as though she is still a toddler anymore :-( Sadly, I didn't get many photo's from our trip- a sure sign that I was mostly pinned underneath Elin for the duration but suffice to say she had a lovely time. She was spoiled rotten AGAIN and as usual absolutely revelled in being around the children. She only has to hear their voices and she's laughing, it's the cutest thing. 

Well. we're home again now and that brings us up to date with Elin's Christmas adventures so far. I'm not sure what else we have planned but as she doesn't return to school until the 9th of January this year I'm sure there will be plenty of holiday fun yet to come- I'll be sure to keep you informed. 

Thanks for reading about our girl, hope you all had a wonderful, happy and healthy holiday

Ruth xx

Christmas Angel

Today I spoke to a Mum who has lost her child. Another grieving Mum in our world, another of Elin’s friends at school has devastatingly grown her angel wings. She will be buried three days before Christmas Day and I don’t understand this world anymore.

This Mum took me today and showed me a photograph of our daughters playing together in her beautiful school tribute display. No bitterness, only bravery. Strength beyond explanation, determined to do her girl proud and encouraging others to think of the good things. I cannot stop thinking of her grit and her mettle, a soldier of emotion and a solid pillar in a crumbling temple of life as she knows it. Once again I am left reeling by a courage and dignity I can’t comprehend, I hear myself uttering the cliche yet again ‘I couldn’t do it, I couldn’t be that strong’ but I know I could. Because these Mums have not only had to be strong from often the moment they gave birth, but they have watched their babies be stronger every day of their lives than any one person has to be in a lifetime. Watched them fight and watched them win, watched them rally and seen them beaten. So I finally understand after all this time, as I look at the pictures of this twinkling girl always shining in life and now forever a Christmas Angel, that the strength of these incredible Mums doesn’t come from them- it comes from their children. 

Sharon

Claire

Anna

Diane

Helen

Annie 

and 

Amy.

You are heroes. 

You are doing your amazing children so proud each and every day, this is your gift to their memories. You are my daily inspiration. 
Ruth 

xxxx

Elin's Diary #4

Well we started the week still in Narnia with an unheard of snow-day off school and I think it's fair to say by Monday tea-time we were all a little fed up of the snow, as beautiful as it was! It's obviously so very difficult to get Elin out in it, whereas I could have walked in it forever there's only a limited amount of time she will tolerate the sledge and her chair certainly wasn't getting out in it! It's such a shame really as I think she would have enjoyed the sensory overload of being out in it and sensing the difference. I read an article by a visually impaired person that said even though they had hardly any sight at all and  obviously couldn't see the snow, the sound and atmosphere is completely different when it snows because everything is muffled and the surfaces don't reflect sound the same. It was fascinating and I wonder if this is a little what snow is like for Elin. I really would have liked to get her out more to find out how she really felt about it, but I guess without snow tyres this is a bit of an impossibility!
                   
I did manage to get out for a bit of a solo stomp up by our house and it was just stunning. I felt like the White Witch was going to fly past on her sled looking for Aslan!
Elin was really happy to return to school on Tuesday and had a good start to the week with lots of Christmas craft and some good sitting. Sadly, as the week progressed the sitting decreased as the dystonia increased. What better day for Elin to decide she wasn't going to sit in her chair AT ALL than school Christmas play day?! Thursday saw a complete lack of ability to sir for any length of time at all and sadly it coincided with her turn as a beautiful Angel in her concert :-( This meant that for Elin, the Christmas play was a bit of a wash-out this year as it was impossible to leave her in her wheelchair and thus pretty impossible get her safely onto the stage. Once again we find ourselves massively frustrated by this dystonic condition which when it rears its head badly can interfere with her experiences so profoundly. I know on a different day she would have absolutely loved it and this is why I hate it so much- ultimately it takes away her fun. It just isn't fair.
Fortunately, one of the Drake sisters did manage to get onto a stage this week! Caitlin did her annual turn in Birmingham Town Hall for their Christmas concert. Family who attended the concert managed to get this video, for those of you hard-core blog fans who I know like to follow Caitlin's adventures too, this is her singing "I Dreamed A Dream" from Les Miserables. Sorry for the distant view.

Elin has watched this gorgeous footage (we are so proud) about five times already today and without a shadow of a doubt absolutely recognises her sisters voice and just grins all the way through. It's amazing to see! On that subject, Caitlin came home from Drama school in London for Christmas this week and managed to be here for when Elin's bus got home on Tuesday. Once again the instant recognition in Elin's face was amazing and I am kicking myself for not filming her reaction. I did manage to get a couple of photo's though which I think give you an idea of how pleased she was to see her!
                    
Just amazing. Definitely made me a bit teary!
Elin's dystonia has been a little better but she's definitely having a bad spell this week, logic dictates that it will pass but it means everything is a little more difficult and it means having to watch her be uncomfortable. Not much fun. We cancelled a visit to the Cinema in Chester today to see a special showing of 'The Wizard Of Oz' which we were really looking forward to and which on an ordinary day she would have loved because we just don't think she'd have got much from it other than upsetting herself, particularly as it's a fair journey in the car to get there (for Elin anyway!) so the dystonia would almost certainly have stolen her joy. Again this was really disappointing but we just have to accept as always that when she is dystonic some things just can't be done.  It's not about being defeatist as sometimes we do just have to try and power through it but we have to ask ourselves in some situations what it would achieve and would Elin really enjoy it when she's feeling that way :-( As a good friend is stuck in hospital with her little one this week and I know some little friends of Elin's are too, we know things could be so much worse and we have to always keep at the forefront of our minds that she is well and happy and the dystonia must just be endured! Elin copes far better with it than me actually. She is such a brave little trouper.
Fortunately we did manage to visit one of her favourite places in the world this morning- the hairdressers in our village! It was time for Elin's Christmas haircut!! Once in the chair on my knee she was as good as gold and laughed continually as usual whilst they snipped her fringe. I think you can see by the photo how amusing she found it! I think for the rest of the day it will be snuggles, stories and maybe one or two Christmas films. We haven't even watched 'The Snowman' yet this year which is Elin's very favourite. We've got some catching up to do.

Well we're entering the last week of term now and I can hardly believe how fast it's gone as it doesn't seem two minutes since we were in Disneyland at the start of term in September. We've got another busy week planned culminating on Friday with the best part of Elin's school calendar, The Christingle performance and then a visit to the stunning Chester Zoo 'Lanterns' which we so enjoyed last year. 

"It's beginning to look a lot like Christmas!!!"

Have a good week folks.

Ruth xxx

Elin's Diary #3

Newsflash! Christmas has come early at the cottage! For the first time in living memory Elin and I have managed to persuade Paul to allow the tree to go up before mid-December. Even Ebeneezer Drake himself was powerless to resist the charms of 'trimming up' to a Christmas song soundtrack as a snow blizzard raged outside. You'd have had to have been made of stone not to feel just a little Christmassy, so the tree is up, the lights are on, we've watched 'Elf' (note the matching T-Shirts- we're big 'Elf' fans here) and Elin is LOVING IT!! Oh- a point about our tree. It's not the most aesthetically pleasing I know. I would love to have a real one covered in only white berry lights and glass baubles. I realise ours looks like one of Santa's Reindeer's just vomited a load of Christmas decorations all over it.  But Paul has years worth of Christmas decorations that belonged to Elin's big brothers and sisters and they all have a story and HAVE to go on the tree. My own family adopted the tradition of buying Elin a new decoration each year and over the years I've had precious decs as gifts, too. So I have to concede it makes sense to have a tree of memories instead of a tree worthy of a Christmas advert, its not the most beautiful but you can definitely find something new each time you look at it! Anyway Elin approves :-)

Following the excitement of putting up the tree on Friday though, came a not-so-exciting Orthotics appointment. Luckily the Orthotist was visiting us at home and give him his due he battled through the snow storm to get here. I struggle with anything to do with Elin's feet. It just upsets me that they are so bent :-( Some of this stuff never gets any easier. It's a total catch 22 because the more you try to correct them, the more it hurts Elin and there is trauma to her skin on her feet and ankles. But if you don't try to correct them at all, then standing in her frame could start to become very uncomfortable for her and may even start to get impossible, as she continues to weight bear on the outside of her feet instead of the soles of her feet. Standing is so good for her that we want to avoid stopping her standing in the future. At the moment her AFO's and specialist shoes aren't really doing their job when she is in her frame. Hence the specialist Orthotist visit. He was very reassuring. NOT!!!! "Her feet are absolutely terrible aren't they!! Why have they been allowed to get like this?" etc etc until I wanted to cry or fling a few baubles off the tree at him before asking him if he was aware it once took us over 12 months to get one pair of boots via the NHS and even then they still don't fit (I'm not knocking the NHS, it's just an overstretched service in an horrendous period in history for anyone with any kind of specialist needs I realise, but it makes sorting these issues out nigh on impossible whilst all the time they get worse) . Anyway the point is, Mr Straight-Talk has a plan for a special pair of boots she will wear whilst in her standing frame that should help a lot with this issue given the fact that we really don't want to consider surgery. So we will forgive him his bedside manner and hope he can deliver what he promised. 

Another, rather more successful appointment this week was Elin's assessment at 'The movement Centre' in Gobowen Hospital. Anybody wanting to take a look, the link is here https://www.the-movement-centre.co.uk. We're not sure how Elin got to nine years old without us hearing about this place but anyway a visit is better late than never I guess! The centre aims to develop movement for disabled children in different ways depending on need/ability (in Elin's case it will be by trying to improve head control and core strength) . She went on Thursday for an extremely long assessment and it's fair to say we were both soooo proud of her. She tolerated all the manipulation/moving/positioning brilliantly by people she had never met before. She really was a superstar, especially since the whole thing had to be done sans clothing too!! Brrrrr!!!!!

The director at the centre decided that it was worth trying a programme with Elin for the next 12 months. This physio programme will run alongside all Elin's other physio programmes and will not interfere with any other work being done. She was measured for a specialist standing frame which we will keep at home which will support her from the chest downwards and gradually remove a head rest  allowing her to practise side-to-side head movement and trying to encourage her to keep her head up. We are not expecting miracles and neither are the centre but we think that it's worth a try. They will set a programme we carry out at home and then re-visit them every so often to measure progress. Should be interesting! I think Elin is certainly in a more settled place now than she's ever been to tolerate extra physio work. We'll see. The movement centre was a lovely place and the staff were amazing with Elin. We felt immediately comfortable there and she even met Santa and had a toy! This is another place largely funded by charity and run with the help of many volunteers. Once again I was left feeling incredibly grateful at the generosity of strangers and incredibly lucky to live in a country where this kind of intervention and support is available to Elin and families like ours.

So finally Elin has rounded off another great week with lots of fun in the snow!! It really has been a lovely weekend. I can't remember the last time we had snow in December but I don't think there's anything nicer than snuggling by the coal fire as the snow falls down outside! We even managed to get a little ride in the sledge today- hurrah!! 

That was Paul's cardio workout done for a week!! 

 I think we need to look into getting a specialist sledge, apparently available for £358 https://www.amazon.co.uk/Cerebra-Sledge-Ideal-Disabled-Child/dp/B00B4WZ66Q Hmmmm!!! (Paul has already uttered the immortal words 'I think I could build one of those!!!!' Oh god)

This one did the job for today though. 

Have a wonderful, cosy, Christmassy, snuggly, happy week folks!! I'll report back next week on Elin's further adventures.

Thank you for taking an interest in our girl :-)

Ruth xxx

Elin’s Diary #2

Wow. Just look at this year’s School photograph! It arrived yesterday and looks even better than the proof they sent home for ordering, which is a good job since I ordered enough to keep the photography company in business for another twelve months! We both actually had a little cry when we opened the package that came home with her on Friday and saw what a truly beautiful photo it is. She looks so grown up and the way the light in her eyes is shining is just so perfect. I think it really captures Elin’s cheeky spirit. A massive shout-out has to go to the School staff here -the eagle eyed among you might notice that there is a person holding Elin draped in black cloth (genius solution to the dystonia/seating issue which can hamper school photo day and has done in the past). This person is Elin’s ever amazing key worker and I know her class teacher and possibly others would have been there too working hard to orchestrate a good shot. It can be so difficult and we so appreciate the outcome. It’s the best one we’ve had for years I think Elin looks like a movie star! So any family reading this you WILL be getting a copy of this and any non-family members who fancy a wallet sized snap or bookmark give me a shout.

It’s been another good week in the land of Elin. To my knowledge there has been no more sleeping/snoring during lesson time and Elin has started rehearsing her school Christmas play! Exciting! Perhaps the best news from school this week though came from the vision people who visited and gave Elin her annual eye test. Her vision has improved again since last time they tested her. This is fantastic news obviously and we are so proud of her. One of the most difficult things for me to grasp over all these years has been Elin’s reduced vision. I think it’s so cruel that the one thing that could greatly aid her understanding of the world around her also eludes her. Sight. But we have always known she does see, albeit in a very different way to us, so it’s been a constant attempt on our behalf and her school’s behalf to try and improve what she does have in order to keep maximising her quality of life and opportunities to communicate. It’s so wonderful and gratifying to discover that this hard work has not been in vain as she begins to track, briefly focus and follow images on a screen. Once again the kudos has to go to the experts she works with at school on a daily basis, who we use also as our guides in vision development. Once again Elin has proved the doctors wrong, since I distinctly remember being told when we were discharged from Alder Hey aged five that her vision development would probably plateau between the ages of 5-8. Go Elin!! 

This weekend will be a quiet one for Elin really as we have nothing big planned! She really enjoyed opening her advent calendar on Friday (I think it’s the sound of the foil) and even enjoyed a few licks/tastes of chocolate number one!

 

 

Safe to say I think she enjoyed it!

Finally we managed to get out for a nice walk today and Elin was largely good in her chair, hurrah! One of the things I absolutely love about where we live is the range of walks close by. Only last week we discovered a new one which looked like something out of a fairytale as you weaved through the trees on a blanket of autumn leaves without seeing a single soul. I can’t wait for it to snow because it will look exactly like Narnia there! Not all of these walls are suitable for Elin sadly, but lots of them are and we don’t even have to get in the car first. We are very lucky. I’ll leave you with two beautiful photos I got today of Elin as we were out trying to get our daily step count to 10,000 (well that’s just me in an attempt to combat the muffin top or should I say mince pie top?) Hope you have the best week, I can’t believe it’s December again already. Fun times ahead! 

Thanks for reading,

Ruth x

 

My girl:Rainbow chaser 😊🌈

Xx

Elin’s Diary

Welcome to ‘Elin’s Diary’ which I’m hoping to update every Sunday reflecting on the past week of adventures! (Perhaps with the odd post in between, too). It’s been overall a good week for our little sunshine girl. She has been slightly off colour - something I’m putting down to the flu vaccine last weekend but is more likely just a little cold or virus with all the excessive secretions that have been plaguing her.  She even had a rather long nap at lunchtime in school more than once this week! Oh dear Elin how sad! She’s not done that since she was a tiddler.  Apparently she was snoring all over the classroom I’ve no idea where she gets those bad sinuses from! (Me) Although we don’t think she demonstrated appropriate remorse! I think detention is the only way forward.

On Friday I missed an apppintment in the athsma clinic for the THIRD time. I can only conclude that my sub conscious being really, really doesn’t want to go or that any *rare appointment that I have for myself with a healthcare professional just never quite arrives on my radar, even though it’s repeatedly written on my calendar! I’ve never once forgotten an appointment of Elin’s so why I can’t muster up the enthusiasm about my own health to remember a five minute check up is beyond me- maybe I’m scared somewhere in my psyche that I’ll be told red wine causes wheezing!! But I do think that the seemingly endless amount of appointments for Elin in the last six months or so has created a bit of a brain malfunction on my part. Perhaps you can carry around too much information in your head and you sort of short-circuit. I feel a bit like I’ve short-circuited! Yesterday for the first time ever we ran out of one of Elin’s medications. I had forgotten to pick up the new bottle from the Chemist. I rooted through the cupboards in disbelief of my own idiocy even though I knew they weren’t there. As I turned the bottle upside down and shook out every last drop, like in that Tomato Ketchup advert from the 80’s, I felt totally gutted. Elin is so vulnerable and reliant on us being on top of everything. Feeling that you let her down even in a tiny way is horrible. Yes we all make mistakes but being wrong is not one of my strongest points! Luckily for us we managed to elicit every last drop out of the bottom of this medicine bottle- taking us up to first thing on Monday morning where the new bottle will hopefully be waiting patiently for me in the Chemist. This barrage of appointments for Elin we seem to have been experiencing is not necessarily a bad thing though, I’m not complaining, she has an amazing team of professionals around her ensuring that she gets the very best care from all angles and for that we are forever grateful (I just wish my brain cells would stop feeling so frazzled and start working at full power again-if they ever have been)

For example, on Friday Elin got to start ‘Hippotherapy’ again. Sadly this is nothing to do with actual Hippo’s (shame!) and instead is a horse riding therapy for the disabled. Elin’s muscles, joints, spine, head control and pelvis are all given a good workout whilst on the back of a mechanical horse with a physiotherapist. One day she may migrate to real horses, but obviously there is a risk there now she is so big and a lot of responsibility for the back-riding physio to keep her safe. So a mechanical horse it is for now, which mimics the movements of a real horse. Elin loved it! It’s so wonderful just to get her doing something new that she enjoys and if there are physical benefits then all the better. 

 

The Clwyd Special Riding Centre is an amazing place which would never run without donations and volunteers. It blows my mind that this sort of opportunity is open to Elin because people are willing to give up their free time to make it happen. The generosity of the human spirit never cease to amaze me. We are very much hoping this is something Elin can continue to enjoy for some time to come.

Elin’s also had a really lovely weekend because it was her Great Aunty Brenda’s 90th Birthday Party! Wow! That’s quite an age and Elin was absolutely delighted to be out at night! In fact she was so good and so pleased we began to wonder if she thought the party was for her! It was a special treat that big sister and all round favourite person Caitlin travelled back from London for the weekend to sing at the party. She brought the house down as usual but what was lovely for me was to see how excited Elin got when Caitlin started singing. She just adored it. Usually I would shy away from taking Elin out at night because I don’t like to upset her routine (or things just aren’t suitable for her) but I’m so glad we did!!! I realised that I get used to going out in the evening without Elin and you always feel like you are missing a limb. It's a feeling you make yourself get used to for practical reasons but it never really goes away. So it was so good to see the extended family together and have Elin there alongside us. I’ll leave you with some pictures of Elin trying to steal Aunty Brenda’s thunder and wish you a really good week. Thanks for taking an interest in our miracle girl 😊
Ruth x

 

   

 

Xxxx

Mother of all Lists

Today a post I wrote for Clemmie Telford AKA 'Mother Of All Lists', went live on her blog. Clemmie's blog is, in case you haven't guessed by the title, a collection of lists covering pretty much any subject you can think of. Clemmie writes candidly about all aspects of parenthood and beyond and also accepts 'Guest Lists' from other people, covering subjects as wide ranging from dealing with a breast cancer diagnosis or the death of a loved one to tips of planning a great children's birthday party. I am delighted to say my list about living with Cerebral Palsy has now been added to this catalogue of posts. I actually found it quite challenging to write in a 'list' format and struggled with what to include. I think my original 'list' was about three times as long, so editing down to a size people might actually want to read was hard, too! If you'd like to take a read you can find it here:

https://motherofalllists.com/2017/11/10/guest-list-my-daughter-cerebral-palsy/

Happy Friday, folks! x

Saying goodbye..

It's taken me a while to write this and I didn't know if I would write it at all actually, because I couldn't seem to formulate the words.
You might have picked up from my previous post that a month ago one of Elin's little friends passed away. Her name was Eleanor Rose Wheeler, but everyone called her Ellie (or Ellie-Moo or Moo, or Moo-ster), and she was beautiful.  In 2011 Ellie's parents, Richard and Annie, got in touch with us not long after Ellie was born, through a mutual acquaintance. Like us before them,  they had been catapulted into an upside-down world that made no sense after their little girl was born with profound brain damage. Like Elin, Ellie has Cerebral Palsy in it's most devastating and severe form. The similarities between newborn Ellie and our two year old Elin were such that Annie and myself christened them the 'cosmic twins'. They even looked quite alike, especially when they were both little, though as she grew there was no mistaking Ellie's amazing trademark wild curls.
Ellie's death hit us hard, though she had been bravely battling against all the odds for some time. It was a testament to her strength and incredibly courageous character (echoed by the strength and bravery of Richard and Annie throughout her life) that she continued to defy the predictions of the medical staff for so long before she passed away. As we said goodbye to Ellie eleven days ago it struck me that most people will never have to attend the funeral of a child in their lifetime, a good thing obviously and a position I envy acutely. When you have to say goodbye to a child you have known it changes you. It makes the world seem an (even more) unfair and sinister place. Nothing makes much sense. It makes you question everything you know. You never forget the details of the day, the sheer magnitude of the situation. It's devastating in the truest sense of the word.
 I thought of that poem I hate as I stood in Ellie's beautiful funeral service "Welcome to Holland"(http://www.our-kids.org/Archives/Holland.html) If you don't know it, it is basically a massive extended metaphor for the life of a Special Needs Parent. I hate it because even though I applaud the sentiment, it simplifies the depth of feeling and complexity of emotions that this life brings with it way too much. I do agree that the only thing to do in life is to make the best of a bad situation, that yes our path has deviated from the 'norm' but that it can be just as wonderful. Except that quite a lot of the time, it isn't. It just isn't that easy. As I watched Ellie's family saying an unthinkable goodbye to their daughter, sister, granddaughter, niece and cousin I thought it's not like being in Holland, parenting a child with severe disabilities. Sometimes, it's like being in hell. A hell which no other parent can begin to truly imagine, unless they have been in the exact position themselves.
This is where we are bonded together as parents of children with similar conditions, in dealing with the initial horror of a life changed and then gradually coming to terms with our 'new normals'. We have all been through the same patterns. The obliteration of any kind of post-natal joy, the constant stress from the word go, the fights for help, the hospital stays (and Ellie's Mummy and Daddy had more of these than you could imagine), the helplessly watching your child suffer, the worry, the equipment, the medication, the home adaptions you never believed you'd have to have, the blessing of every birthday, the sorrow of what could have been. We know one another because we are each other.  In the realms of our exclusive little world, in the family of parents we have become, bound by sorrow and despair and great joy that no ordinary parent could ever understand, we are all one person, one child, one family. So when one is lost, then we are all at sea.
Despite this exclusivity of fully understanding the deepest depths of parenting a child with complex needs, I think most people instinctively understand the bravery and courage of kids like beautiful Ellie and their impact on the world around them. Something that will stay with me always from Ellie's funeral were the descriptions of how happy she made everyone around her. How she bound people together with her smile and how she was able to provide a new perspective on the world for all who cared for her. Just how special her place on this Earth was, how important. Six years is not long enough for any child to live, but how Ellie packed such a lot of love into those six years! There are plenty who could only dream of having such an impact after a whole lifetime.
We will miss and remember you always, Ellie, you gave the world so much more than you could ever know. You changed us all for the better and you did it all in six years. Elin's little cosmic twin, you were a shooting star in the universe of all who knew you- shining too briefly but so magical, brilliant, luminous and unforgettable.
Everyone was proud to know you and we are all richer people for it. This is your legacy.
Rest in peace, little Moo.

xxxxxxxx

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