Mum Making Lemonade

Living with Cerebral Palsy 🍋🍋

Sunday, 19 November 2017

Detox

                                             
Happy Sunday folks
If you’re joining me from Instagram, welcome to the blog 😊 You will have noticed that I’m exiting Instagram for the time being, not sure if it will be permenant. It wasn’t an easy decision because I so enjoy regularly sharing pictures of my gorgeous girl with all who are kind enough to take an interest in her life and the ease with which this can be done via Instagram. It has been lovely that in addition to the Instagram community, so many of our friends and family have been dipping into my account for the little bite size pieces of info on what she’s been up to lately which accompany the pictures. Similarly, I have met many families via the app like ours and so enjoyed creating a small support network in interacting with these families. For me, that has been my favourite bit of sharing our story. 
However just recently I’ve been feeling a bit taken over by technology. It’s a bit of a naff phrase but I think I need a ‘digital detox’. You can get addicted to scrolling though a social media homepage several times a day and that’s what I feel like I’ve been developing with Instagram, an addiction (sad I know!). So as with any addiction I think the only way to quash it is to go cold turkey. There are a few other lesser issues I have with Instagram at the moment too but in a nutshell, that’s it. 
I’m hoping this will also give me the motivation to re-focus on this blog 😊 I’m thinking about the possibility of going back to weekly round-up posts as a means of keeping everyone updated on Elin’s progress. If you want to submit your email address for notifications of new posts you can do so via the 'Follow by email' button on the right sidebar (I'm not entirely convinced this works yet, please let me know if it doesn't!)
Anyway back to Elin :-) The above photograph was taken yesterday at the Zoo (yes we were there again!). We had a lovely day, Elin’s dystonia was non existent and it was so nice to get her out in the fresh air. Spending quality time with her really is a true privilege. She was as good as gold and loved it. The stuff dream Saturday's are made of! Sadly Elin’s not so good today- she had the flu nasal vaccination yesterday before we went to the Zoo and I’m not sure it has agreed with her. So just chilling at home is on the agenda today- that is the best kind of Sunday though, right?
Thanks for the continued support.
Have a lovely week
Ruth xx
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Friday, 10 November 2017

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
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Tuesday, 24 October 2017

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


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Wednesday, 4 October 2017

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




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Wednesday, 13 September 2017

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.
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Wednesday, 23 August 2017

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


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Thursday, 20 July 2017

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
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