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

Mission Disney

It's difficult to articulate why taking Elin to Disneyland is so important to me. It started I suppose with an early Disney obsession. My twin sister and I would devour our Disney VHS's until they were worn out and even had a video of sing-a-long songs filmed at the holy grail of imaginative destinations, Disneyland. God how we begged to be taken there! As we made the transition from kids to teenagers, films like 'The Little Mermaid', 'Aladdin' and 'Beauty and the Beast' seemed to represent an escapism from the unsettling strangeness of impending adulthood and maybe that's why we think of them so fondly. My walls at fifteen years old were covered with Brad Pitt, Leonardo Di Caprio and Johnny Depp but also 101 Dalmations and Lion King posters. Before you dismiss me as a massive saddo I promise I was not alone! It was the golden age of Disney and maybe the golden age of a certain kind of pre-social media/mobile phone innocence lost forever now I guess in the world of early teenage years.

Luckily for us we got to visit Disneyland in the end for our 16th birthday (thanks Mum and Dad!!) in Florida and it really didn't disappoint. So Disney takes up a lot of my happy childhood memories and I think sub-consciously I always thought its something I could share with my kids one day. That's the thing about loving Disney films, it transcends generations, from the 1950's classics up to the present day. Even your Nan and Grandad know Disney films, it's just part of childhood nostalgia. 

So of course I had this dream of taking Elin one day, especially since I know they are geared up so well for disabled guests. This momentous moment happened in 2015 when we went to Disneyland Paris (Florida deffo not an option with Elin's hatred of travel and heat!) and we had a wonderful time. Elin's Daddy did not grow up with a huge love of Disney like I did (although he does love Buzz Lightyear haha) but it took all of half a day for any 'corporate money-grabbing' scepticism to disappear. Its the magic, it just sucks you in! So we had such a wonderful time that I said I didn't want to go back in case it wasn't as good and it spoiled my memories. Well that lasted just over two years then with the advent of an incredibly good health spell for Elin, we decided it might be time to go back. 

I was WAY calmer this time. In fairness Elin hadn't spent the week before we went in hospital so that did make things a little easier! 

The thing is, getting Elin anywhere with her dystonia can be a massive mission. Or not. Depending on the day and her mood. Getting Elin anywhere with her dystonia AND enough meds/nappies/tubes/feeding equipment etc etc can feel a bit like a "Mission:Impossible" to be honest. So as Elin's Daddy packs two T-shirts, one pair of shorts, some pants and some ginger biscuits (yes really. An absolute necessity apparently!) I am a slave to lists, baggage allowances, suitcase spaces and travel arrangements for weeks before. That's without the worry of accidentally breaking one of her epilepsy medication bottles en-route. Not an easy time to control my anxiety, but something I have to suck up and get on with if we want to go.

Reflecting on the way back this time (if you've been following my Instagram you will know we had the most incredible time but more importantly, Elin enjoyed every second which makes the mission completely worth it of course) I thought about just why it's such a big deal to me. I think it's because even just getting out there and back without any dramas feels like and incredible achievement. Seriously. I didn't forget anything vital, I managed to get everything into two cases plus hand luggage meaning Paul could wheel the cases and I could push Elin's chair (apart from hanging stuff on her chair you effectively only have one pair of hands to carry all the luggage which is why packing is so problematic), Elin was well the whole time we were there, there were no train delays (would have been a nightmare with Elins dystonia). It went as smoothly from start to finish as we ever could have hoped. So even all that means the holiday went well. To add into the mix that Elin actually visibly had the time of her life, so much so that we both welled up a fair few times each (ok, we both actually cried at least twice each), is the icing on the cake. It turns a great holiday into the best holiday ever. The only thing missing was Elin's beloved big sis, back at Uni for her second year, but once again we thanked the technology gods for face time and we didn't have to miss her too much!!

Elin wanted for nothing. She went on almost every ride that was available to children. Not to mention watching the street theatre, parades, musical shows (west-end standard but a lot shorter) and meeting characters (the actors are wonderful and talked to Elin beautifully, she was captivated). The French, it would seem are not quite so uptight about health and safety as they are here in the UK. If her chair wasn't able to go on a ride, they let us carry her on and sit with her. Joy!! This common sense attitude literally changed her experience into an amazing one. You've only got to look at her face of the 'Dumbo The Flying Elephant' ride to see what I mean. She was in heaven, therefore, so were we. 

For our part we were pretty exhausted coming home. The lifting gets to you after a day or two, in the absence of a bed/changing platform/bath at the correct height in the hotel room but also the lifting in and out of her chair for cuddles all day in the park if her dystonia played up a bit (thankfully it was for the most part entirely under control)Also,  there is still a kind of level of stress involved in taking Elin away, however swimmingly things go. This was evident in Paul's utter panic when Elin fell asleep during the parade (she rarely falls asleep in the day time). I was returning from the shop and could see the panic on his face- he said she was laughing one minute and the next minute he couldn't wake her. Between us we quickly worked out that yes, she had actually just fallen asleep! She was exhausted from all the fun and soon woke up again!! But Paul (who literally never usually panics) said his heart just dropped into his stomach because it suddenly hit home that we were in a foreign country and how vulnerable Elin actually is and in turn how vulnerable that made him feel in terms of if there had been an actual health emergency. The reality of our situation is never too far away.

So I love taking Elin to Disney because it feels like completing a massive mission successfully and achieving the once-impossible. It felt like a dream had come true when we walked through those gates and saw the iconic pink castle again . Just getting her there felt like a victory, we were on top of the world. I could take my daughter to the embodiment of my childhood imagination after all and not only could I take her but I could watch her having the time of her life just like everyone else. There was a time, when she was younger and pretty poorly that it felt impossible. But I guess it goes to show that dreams do come true after all, just like Disney would have us believe. In Disneyland Elin is truly equal to every other child because there's nothing they can do that she can't. Obviously her experience is different, but it's not less. 

Just like her. Different, but not less.

This was supposed to be our last visit, before she gets too big to lift. Somehow I don't think it will be.  The bubble of equality and happiness there is like a drug, once you've had it you want more! So until our next 'hit' Disneyland, au revoir......you really were the best :-)
Thanks for everything.

When you wish upon a star

Makes no difference who you are

Anything your heart desires

Will come to you.

If your heart is in your dream

No request is too extreme

When you wish upon a star

as dreamers do.

Like a bolt out of the blue

Fate steps in and sees you through

When you wish upon a star

Your dreams come true.

It's ok not to be ready..

On this parenting journey through Quadriplegic Cerebral Palsy, there are  a lot of things we have to face that we're not ready to. This started of course at Elin's birth with accepting the diagnosis, which we didn't want to.  It continued through accepting tube feeding as a permanent,  a kitchen full of medication and a spare room full of equipment. Accepting a different community, a different set of priorities. Accepting a set of four wheels where her Clarks 'First Steps' should have been. More recently accepting a hoist just to get her into a bath. Accepting that dystonia will regularly render us housebound. We've had to accept a future we really weren't willing to approach and lets face it, a different life entirely. We had no control over any of these things- for a committed control freak that's pretty hard going!!
But, there are one or two things we have been able to delay facing. Leaving our beautiful little cottage for one (we successfully argued the case against the council to have adaptions done here, buying us a few crucial more years). Sending Elin to respite (respite facilities near here are AMAZING but thanks to help from family this is something we've not yet had to consider in terms of her care) and moving her into her own room. Yep, that's right, Elin hasn't really slept in her own room for the past nine years. I have no strange earth-Mum organic childhood development philosophy about this, I'm far from a co-sleeping parent advocate,  in general terms I'm far more practical than I am molly-coddler (when I was pregnant I had grand plans of the baby being in their own room by six months at the latest and Elin's Daddy agreed), I love my sleep and my privacy. Yet somehow, here we were. Nine long years and no movement.
Believe me I know how ridiculous this sounds and in truth I'm a bit (quite a lot actually) embarrassed about it. If you're a friend or a member of my family THANK YOU for biting your tongue on this as you undoubtedly have done. I wasn't ready to hear whatever you might have said before this year. If you're a professional involved in Elins life and you're reading this, Im sorry!! I lied because I couldn't bare to admit that we had a downstairs room kitted out for her with a hoist, moveable bed etc and we were still carrying her upstairs to sleep in our room every night. But I wasn't ready and I'm not sorry for that part. Everything else in Elin's life has had to happen whether I like it or not from day one. Decisions about her health, future and provision are rarely my own as her Mum. This was my decision and for a long time I was happy with it.
I am up often several times a night. Elin regularly chokes in her sleep. She often needs middle of the night nappy changes due to being pump fed overnight and the sheer amount of liquid she is taking in. She almost always needs medicating halfway throughout the night too, since her brain doesn't naturally produce the sleep-aid Melatonin. I just didn't see the point in racing up and down stairs all through the night to do all this. Especially when I was teaching as well as being Elin's Mummy. I was just too exhausted to want to think about it. Then my friends son who also had Quad C.P passed away in his sleep and through our heartbreak we became even more jittery. I think it would have been weird if we hadn't. So just like that, twelve months turned into two years, then four, then six and suddenly we had a nine year old sleeping in our bedroom and I was unable to carry her downstairs in the morning anymore, relying on Paul do do the lifting.
Around this time I stopped being unable to face the prospect of Elin sleeping downstairs and us sleeping upstairs. I started to wonder if it was time, the set up seemed vaguely ridiculous. She had done so much growing between he ages of 8-9. Not only that but her health has been so brilliant, no seizures or hospital admissions for almost two years. Her 9th birthday really helped me focus on all of this. She's just growing up.  I ordered a video monitor system (fantastic- 'Hello baby' from Amazon) and took a deep breath.
Last night was the first night we put 'operation big-girl sleeps' into motion. It went brilliantly. Elin only got me up once. I'm not naive enough to think that this will be the case every night and I'll probably curse my decision one night in the not too distant future on my sixth descent down the stairs, but the fact is I felt ready. We both finally felt ready as parents and I think Elin is too (it's only the past two or three moths that she's stopped choking in the night for example, something we couldn't have coped with if she was out of our sight I don't think).
I'm not writing this post to justify the past nine years, because I don't think I need to-at the end of the day that's just how it had to be for us and its surprising what you get used to. I'm writing this post because I want to share its ok not to be ready sometimes.
That goes for all aspects of Motherhood I think though, special needs or not. It comes back to trusting your gut, not pressurising yourself into things that aren't right for you and not caring what everyone else thinks (ahhhh! the true holy grail of parenthood right there!!)
Paul and I did feel a little weird this morning, this definitely marks a new era for us and we can't deny that Elin is growing up in her own special little Elin way. But mostly we felt pretty happy and totally confident that we couldn't put off this change any longer. It felt right, so it was.
And I think that's probably a pretty good rule of thumb for most of my parenting decisions, which I shall remind myself about next time I'm beating myself up over some small decision or other. Honestly I will, I promise :-)

P.s Thanks for the messages about the blog (or lack thereof). I've lost my blogging mojo a bit lately (and also my wifi connection which doesn't help but that's another story) I hope my 'Bitesize blogs' on Instagram have made up a little for this and enabled you to follow Elin's Summer adventures (link on right hand sidebar)

xxxxxx