Dodgy few days..

Another tricky couple of days for Elin with two consecutive days of needing rescue meds at school after increased dystonia/dystonic attacks. For blog newbies, dystonia is what Elin was diagnosed with last year. It causes her body to go stiff and convulse and renders her impossible to handle. Dystonic attacks present in an identical manner to Elin's epileptic seizures, so it's taken a long time to learn to differentiate between the two. The main difference is that whilst prolonged seizures are in danger of causing Elin more brain damage if mishandled, dystonic attacks are not. But they are equally unpleasant and both eventually require the same treatment- buccal medazolam followed by a swift visit to hospital if she does not recover. Yesterday we paid a little visit to our ever accommodating local G.P who gave Elin a good look over, as I was concerned there may be something underlying causing her current bout of dystonia (ear infection, sore throat etc) but she couple find nothing. So we are back to not having my beloved 'answers' and keeping our fingers crossed and hoping a slight increase in her diazepam will do the trick, since its been a few days now since she was entirely 'herself'. However, tonight she seemed to perk up before bed. Her eyes became 'engaged' and she laughed and smiled- at having her teeth brushed of all things! So I''m hoping that a good night's sleep (which she most definitely didn't get last night- yawn!) will re-charge her batteries and set her back on track.

Cuddles with Daddy really helped Elin to feel better! Hoping for a better half to the week now...

Lucky lady(s)

Elin received this belated Easter present through the post from a blog fan today- you know who you are! I was so touched, what a thoughtful thing to do and such a sweet message. It never ceases to amaze me how Elin capture's people's hearts and how kind everyone is towards her. I will never take it for granted, she is one lucky lady to have so much love and support in her life.....and so am I. Thank you ❤️

Speechless

http://www.independent.co.uk/news/uk/crime/mother-charged-with-murder-of-her-three-children-appears-in-court-as-husband-breaks-down-in-public-gallery-9286902.html

By now most people will have heard the story of the Mum from London who stands accused of killing her three disabled children. It's one of the saddest news stories I have heard in a long time and when I first heard about it I couldn't stop thinking about it. I want to understand, I want to comprehend what would make a -by all subsequent accounts-loving mother kill her own children. But I can't. Much has been made by the media of course that the three children were severely physically disabled. There is an inference in each bulletin, or report, that the Mum must simply have been struggling to cope and come to terms with a genetic condition that blighted the lives of her three youngest children. Of course, I understand to a degree what those first few months and even years are like after initial diagnosis, and that's only with one child. It must be triply hard to grapple with the news that three of your children will need lifelong care. It's hard to imagine how that feels, even for mums like me. But then I read more about the story and I see photo's. The children, smiling, beautiful and strong. I discover that the Mum was part of one of the richest families in London. That she had a Nanny and a Maid and also daily carers to help her. Of course this cannot mean that her pain was any less and seeing her children go through so much was any easier than any other mum. Yet- she had so much help. It's increasingly difficult to even begin to understand what would make her think that harming her children was any kind of solution to how she felt. You can only assume she was desperate, or that she had lost her mind. I know two siblings myself with the condition these children had and they are two of the most amazing children I have ever met. Hugely intelligent and learning to be so independent now with the help of motorised chairs, they have so much to offer the world. Their Mum does not have a Nanny or a Maid or live in a mansion. She is a single parent. So I wonder what makes some people so able to cope and other's not? A myriad of reasons I guess. But the more I try to muster up sympathy for this woman and what she must have been going through to do something like that, I just can't. There are so many alternatives to what she chose to do. With the media making so much of the fact that the children were disabled, lots of people will assume she simply couldn't cope.  I can't help but feel this perpetrates the myth that people with disabled kids must have a terribly hard and depressing existence. Dare I say there has been hints in some conversations I have heard on this subject that the fact the children were disabled provides a slither of an excuse, a reason. It really doesn't. There is no reason and no excuse. Every single child born into the world has a right to existence, to life. Every life is worthwhile and important, whatever the circumstances. The fact that the very person who gave these children life was the same person who chose to take it away is the most  poignant and chilling fact.  I am sure she will suffer for the rest of her life over what she has done, as will her husband and eldest child, who has lost her three siblings  in one fell swoop.  I am sure not a day, or even hour, will go by without her thinking about it. But when I think of all the parents out there losing children who they so desperately want to hold onto and when I see the photo's in the paper of the gorgeous children just at the very start of life, I cannot feel any empathy whatsoever, rather I am simply rendered speechless. RIP lovely children, whose only crime in life was to be born to the wrong Mummy. I didn't know you at all but your story touched me deeply and I certainly won't forget you in a hurry. Let's hope if there is anybody out there in similar circumstances who feels unable to cope that they might be jolted into seeking the help they need by this absolutely tragic and heartbreaking tale.

Throw Back Friday...

..To the Easter hols last year, when the weather was very different! Elin was a snow-baby!! I actually love snow but would have preferred for it to arrive in work-time! Elin is quite non -plussed about it, but has had her fair share of rides on the sledge in the past which seems to amuse her. No snow this year- surely it's safe to say that now with May approaching? Hmmm!

Not such a good couple of days for our girl this week sadly. She had a seizure today (or prolonged dystonic attack, we're not sure which) requiring her 'rescue medication' which she hasn't needed for so long! I think she has been feeling under the weather for a day or two as she hasn't quite been herself. Really hope whatever is niggling her disappears very soon! Hate to see her like that and hate even more that she can't tell us what's wrong :-( The feeling of helplessness doesn't ever really get any easier....

Park Hall Farm..Again

Elin has been continuing her Easter holiday adventures by visiting Park Hall Farm, in Oswestry, again. We went along with a good friend of mine and her little girl, Lily, who is a year older than Elin. This is one of our favourite places to visit and I know I have blogged previously about it, but it's just so handy for us. The value is incredible given that it's just £7.95 per person and you can literally spend all day there. Also, there is full wheelchair/buggy access and almost nothing that Elin can't have a go at or take part in. The staff were really sweet and went out of their way to include Elin, when she couldn't milk the cow they went and brought her a newborn goat to stroke instead. The waitress in the cafe noticed us, came over and offered to move several tables around to fit her chair in. The man on Reception was at pains to give me the low down on which ride-on automatic cars had space for two, as he thought Elin might be able to ride in one alongside Lily. He also gave us a discount on Elin's entry fee despite it not being advertised and I only realised when I checked my receipt, I didn't ask for it and he didn't mention it. These are all small things but important in making you feel welcome and valued. In addition there was a lovely lady with a camera who took photo's of Lily milking the cow which she said she would like to use on the Park Hall website. When I told her how we quite often visit, as the access is so good for wheelchairs, she asked if she could have some photo's of Elin for the website, too as she thought it might be a good selling point and hadn't considered it before. So keep your eye out for us on the website and if you have children or almost any age I would highly recommend a visit! You definitely won't be stuck for something to do!
Elin's Itinerary-Just a few things she got up to on her visit today!
Playing with Lily on a bouncy castle
Toy tractor driving
Snuggling real bunnies
Riding on a real tractor
Listening to a story-teller tell a Welsh Legend
Feeding lambs
Holding a newborn goat
Watching a pig race (absolutely hilarious)
Visiting a Celtic Roundhouse
Seeing a horse up close (and smelling him! He was a bit windy!)
Go-Karting with Mummy
Helping Mummy milk a cow (don't ask)
Visiting the Victorian museum (I liked the dark corridor)
Stealing some of lily's ice cream.

I'm hoping she will sleep tonight (I know i will!)

Today is Farm day, isn't it Mum!?

Hmmm. A Horse. Hi Horse!

Go Karting! 

The Bunny is so fluffy!

The Lamb was really hungry!

This is so much fun!

Oh, hi Kid!

This bunny is nibbling my chin Mummy!

Tractor riding with Mummy and Lily

You can just see Lily jumping in the background ;-)

After a very busy day Elin was super glad to get home and see Daddy, who had downloaded a new Mr Tumble App to play on! Thanks Daddy!

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Please watch this....

http://dotsub.com/view/a90f208f-2842-4ca2-b125-2daacd523eb9

Please watch this 10 minute short film "Cordas" (ropes) which won the Goya award 2014 for best animated short film. I defy you not to cry (or if you're like me, cry within the first ten seconds and then all the way through). It's in Spanish but you can achieve English subtitles by clicking on the 'select language' button just underneath and selecting 'Spanish 39%' (weird but true). It transcends language really but to get the full effect I really recommend the subtitles. It was created by a father with a child who has C.P and is just beautiful. Thanks to Linzi and her blog for introducing me to this and if you want to know more after you've seen it, here is a link to an article about the film's creator and his son. http://www.west-info.eu/award-winning-animation-on-cerebral-palsy-and-friendship/ That's all I'll say, just please watch it!!!

Lent

6 weeks ago I gave up Facebook for Lent. I've never really bothered with Lent but Paul was giving up his beloved ice cream and I felt I should be supportive :-) Since I don't really like ice cream anyway and the thought of six weeks without red wine or chocolate was pretty inconceivable to me I thought Facebook-surfing would be a vice I could actually do without. I figured it might do me some good too, as it can become a total habit and suck away hours of your time a week without you even realising. However I have blogged pretty recently about why I spent time on Facebook and how useful it can be in terms of keeping in touch with other SEN Mum's:  http://cerebralpalsyjourney.blogspot.co.uk/2014/01/throw-back-friday_24.html I had been quite defensive about it. I wondered if I could do it. Well, here we are six weeks later and I haven't logged on once and, my SEN Mum's support group aside, I haven't missed it. I haven't missed finding out what someone I was in school with had for their tea last night or what they have planned for the weekend. I haven't missed seeing the holiday snaps of people I no longer know. I could go on. The only thing I have truly missed is the immediacy Facebook offered in terms of getting updates from friends and family and in turn sharing my little Elin updates with them (they assure me they have missed this, too!). It made the world seem a smaller place. However, I think the positives of staying off Facebook actually outweigh the positives of re-joining so I think I'm going to continue my abstinence. One of my favourite things about not being on there is that I think I have payed more attention to my blog for you lovely Elin fans! And I might have missed opportunities to take little video's like this.....

"Agooo..."

 

Even though Elin doesn't quite start batting the balloon in this video I love how clearly she says "Agoo" which is her way of giving her approval to something :-) Who needs all those expensive sensory toys when you have a sparkly balloon?? 

Good Friday stroll...

I have never really understood why Good Friday is called Good Friday. Wouldn't Bad Friday have been more appropriate?? I'm sure I'm just showing my ignorance here so I'll stop talking and just google it later, along with why Easter is on different dates every year- I know it's something to do with the moon or something, but Christmas is the same day every year!! Yes, stuff like this really does keep my crazy brain awake at night. Anyway, today was most definitely a good Friday for us, as the sun was out and Elin had held onto her buoyant mood from yesterday. We took advantage and went for a stroll in the sun to a local beauty spot. You really do forget where you live sometimes. The scenery around us here is quite breathtaking, we are SO lucky. Elin sat in her buggy no problem and it was even warm enough to sunbathe in front of the river. A pretty perfect bank holiday, hope the sun stays around!! It really is surprising what a bit of Vitamin D can do for your soul!

Throw Back Friday

This photo has been in my Mum's kitchen forever. It's weird when you see something so often, you kind of stop looking at it. But the other day it caught my eye and I immediately thought it would be a great throw-back pic. It was taken by Elin's childminder at the time (I have previously blogged about Elin's time with her http://cerebralpalsyjourney.blogspot.co.uk/2014/02/throw-back-friday_21.html) and they they made the sunflower frame for it together in one of their many craft sessions :-) There is no date on the back but I think Elin must be about 18 months old. Very happy and enjoying life as always with her giant signature smile and ever so slightly chubby cheeks!!!!!

CBeebies Live

Today we took Elin for an Easter Hols treat to see 'CBeebies Live' in Liverpool. We were lucky enough to have complimentary tickets from an old friend of mine from Drama school, Katrina, who plays Nina in 'Nina and the Neurons' on Cbeebies and was performing in the show. I was slightly concerned about whether it would be too noisy for Elin, being in an Arena, but I needn't have worried! She absolutely loved it! Granted, she was already in a great mood which always helps with Elin. But the show was right up her street, as it was aimed at tots. So there was lots of singing, lighting effects, bright colours and funny sounds to make her giggle. We had tickets for the disabled access section, but could only get two tickets together for it, so the other ticket was elsewhere. However, I'm glad to say there are still some people out there with a bit of common sense instead of the total jobsworth's you sometimes encounter at places like this. We explained to the usher that we couldn't buy three seats together so we were going to have to split up and he simply squeezed another chair into our section! Thanks Mr Usher, we so both wanted to see how Elin reacted to the show it would have been such a shame if we had to sit apart and take 'turns' with her!!! It was such a joy to see her respond so positively to what she was seeing and hearing on stage! Of course Mr Tumble was our favourite but all the acts were brilliant and so full of energy. Katrina had hoped we might be able to get Elin's picture with Mr Tumble but it wasn't possible after the show so we'll just wait until next time :-) (Paul was gutted he loves Mr Tumble more than Elin! Haha) There were some really catchy songs too, I'm going to look for the soundtrack to see if I can interest Elin in riding in the car a bit more by playing it for her! So grateful for such another lovely day, hopefully a few more to come this holiday before we have to go back to the grindstone! Happy Easter everyone x

Waiting for the show to start

The one and only Mr Tumble!

Mr Bloom's set and the giant bugs were beautiful

Waving our disco lights!

Elin's face as we left the arena. Says it all!

And as a final treat, as we left Elin got to do one of her favourite things in the world- ride in a lift!!! (She really loves it! She stopped laughing just before the flash went off in this pic though!) Thanks Katrina, CBeebies and the Liverpool Echo Arena- it's been brilliant.

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Easter Chick Fun

A little video of Elin showing good anticipation and reactions this morning! No so happy at her Great Nanny's 80th birthday party this afternoon though with lots of dystonia and no smiles- wouldn't you know it! Happy as larry again now amusing herself batting some balloons around. What a naughty Nellie!!

Never a burden...

A conversation I had recently has prompted me to want to vent a bit on my blog so excuse the talking in general terms but I don't want to embarrass anyone. Just so we're clear, Elin is not and never will be a burden. She is not a patient living in my house. She is my child. It really is as simple as that. She may not be the same as your child but I would no more describe her as a burden than you would your own children. I am not her carer, I am her Mum. Please don't assume that because of her disabilities that looking after her is a chore. Don't feel sad about it and don't feel sorry for me. We do not have a sad life and Elin certainly doesn't as regular readers of this blog will know! Difficult and stressful sometimes, yes. Emotionally challenging sometimes, of course. A bit like raising any child really! Anyway sorry for the Sunday rant but I just had to get that off my chest. Elin is unique, special, funny, gorgeous, miraculous, strong and many other things. But never, ever a burden.

Throw back Friday

Apparently yesterday was national Siblings Day. I don't know what this means exactly, maybe Hallmark invented it to try and persuade people to do more card-buying. But I like to think it has been a day of the year assigned to encourage people to think about their siblings and what they mean to them. When you have grown up with someone and know every little last thing about them it can be  easy to take the sibling relationship for granted. But for a lot of people, siblings are the one person we can truly be ourselves with. You have the same memories, the same experiences growing up, the same heritage. I have blogged before about the lovely relationship Elin has with Caitlin, one which we are lucky to witness growing and blossoming every day. But I'm not sure I have ever mentioned in detail my sibling. My sister, Karen. We are twins and could not be more different in a lot of ways. Probably the reason we get on so well. We have never had to compete with one another. My sister is all Sport and Science and I am all Drama and Performance. Ask my Mum and she will tell you it has always been this way. I am actually quite fascinated by this- how can two people given exactly the same lifestyle from birth be so very different from the beginning? My sister is a Peadiatric Dietitian at Alder Hey Children's Hospital (I am very proud of her for this, she worked her socks off to be there) She would rather gouge her eyes out than go on stage, take part in a play or speak aloud in front of a large group in general. I would rather gouge my eyes out than go for a run, bike ride or swim -despite what it says under 'hobbies' on my C.V :-) Karen regularly wins 10k races and Triathlons in her spare time. I can't even win a raffle. However despite all this and the odd door-slamming 'you took my top' type argument when we were teenagers (poor parents) we have barely ever had a crossed word. Thus, my sister is my best friend. When I think about it, she really is. I would feel utterly lost without her. There is one thing we do have in common, of course. Elin. Karen is the best Aunty Elin could wish for and for the past 5 years she has religiously come every single weekend to visit her, so that Elin knows her voice and who she is. She never feels sad for Elin and is often the person who marvels most at her small achievements. She doesn't want to change her and she doesn't make excuses for her. She credits Elin with being one of the main reasons she branched into Paediatrics after qualifying as a Dietitian and first working with adults. She now treats a lot of children just like Elin, who are peg fed etc. I am proud of this too, I feel like Elin had a small hand in shaping her future. Fate can be funny sometimes. Anyway back to throw-back Friday. It's a picture I found recently which I absolutely love. We are three years old and it is our first day of school. Karen is the dark haired one on the left (you can see traces of Elin there!) and I am the cheeky looking blond one on the right. We were even exact opposites in the way we looked! Despite being two completely different halves, (well technically two completely different wholes as we are non identical) I know wherever we are and whatever we're doing I wouldn't feel complete without her. Happy National Siblings day, everyone!

The Liver Birds....

I absolutely adore seeing Paul's Aunty's, who live in Liverpool and have done all of their life. Their sister, Paul's Mum,  sadly passed away whilst I was pregnant with Elin (she would have doted on her) but whilst they are alive, a small part of her lives on in their unique scouse humour, love of family life, big hearts and ability to knock up a good spread for a family 'do at the drop of a hat (despite both being over the age of 80!!). They absolutely love Elin and go completely gooey over her in the way only elderly relatives can. Today we went to a family gathering with them as Paul's cousin and his wife  were over from Australia with their two little girls. It was great to see everyone under the one roof and Elin thoroughly enjoyed the sounds of everyone's voices, the laughter and even the Liverpool game on in the background (of course).  I was pleased they all got to see her in a good mood, as the last time they were over for a family wedding, she had a seizure (in the Church!) and spent the Reception completely out of it, which upset Paul's two lovely Aunty's greatly. Anyway, Paul's cousin's two girls were fascinated with Elin. They performed little dances for her, stroked her hands and followed me when I needed to feed her, curious about the feeding tube and her medication. The older one is five, gorgeous and very bright. She was hugely interested in Elin and inquisitive too. The younger one is only two, equally gorgeous, but being that bit younger the only concession she made towards Elin's condition was the occasional raise of an eyebrow. Mostly she just brought her toys and tried to hug her- or jump on her :-) So back to the older one, who finally got around to asking how old Elin was.  Caitlin told her, "she's five". She furrowed her brow and I knew what was coming "But I'm five and she's much smaller than me". She then continued to play with her, expressing occasional bemusement that she wasn't holding her head up. Then, a pretty random but insightful question "What was her first word, then??" by now I sensed that her Mum was getting a bit stressed, I really felt for her- you can't stop a child once they're in full flow! But I didn't mind the questioning at all. It was just hard to know what to say, how to explain to such a young mind? "Well she hasn't really said her first word yet" I replied. Again, she frowned "But most children have said a word by the time they are five" (slightly stressed silence now from all adults dotted around us) "That's true" I said, at a loss now of what else to say as all eyes in the room swivelled back towards me. If Im honest, despite being used to this by now, my heart did start to feel a little heavy in my chest, as I saw Elin through the eyes of this little girl and her innocent questioning. But then-  before the familiar lump in my throat could begin to form- she brightly smiled and in the only way a small child can, lifted my spirits as quickly as they had begun to sink. Shrugging her shoulders she simply said " Well, I just think she's very shy". Then she leaned over her, gave her a kiss then skipped off to carry on playing with her Hello Kitty. As my heart melted slightly at the joyful simplicity, unknowing kindness and lovely innocence of her statement, one of Paul's amazing Aunty's leaned over and whispered to me, conspiratorially "Out of the mouths of babes eh love". Absolutely. I've said it before and I'll say it again. The world could learn a lot from seeing things through the eyes and mind of a child. It would definitely be a better place.

Elin and Caitlin and their cousins from down under.

The Liver Legends themselves at family wedding last year. If I have half their energy and lust for life when I'm in my 80's I'll be one happy lady :-)

Throw-back Friday

I was struggling a bit for inspiration for this week's throw-back, but a visit to the supermarket and aisles of tempting chocolate treats reminded me that Easter is very nearly upon us! I think this is the latest it has been in a while and I am hoping this means there is more of a chance that we don't have the four-foot snow drifts we had last year, as we have such a lot planned for this holiday. But more about that in future posts :-) Here are some Easter photo's from way back, Elin was about eight months old. She wasn't even really smiling by this point (something I longed for) but it didn't make her any less gorgeous, as I think you'll agree!

         

          

Charlie Bear

Absolutely devastated to have just discovered one of my online support Mum's little boy, Charlie, has passed away. Strange to think that we never met. I have blogged before about the power of the internet and the communication it allows you with other parents that in a pre-cyberspace obsessed age  you may never have had. Michelle was a Mum I met through a Facebook support group. The group was started by a Mum who lost her own daughter to West Syndrome a few years ago (West Syndrome is the name for Elin's form of Epilepsy) and has many members throughout the UK. However, there is a group of us from the North West, some of whom we have been lucky enough to meet with. Sadly Michelle was not one of these Mum's but our communication was regular and supportive nonetheless.  I can't quite believe we never met in person in fact, I feel like I know her. I felt like I knew her beautiful boy, Charlie. "Charlie Bear". So the news that his health unexpectedly and rapidly deteriorated yesterday with an infection and subsequent renal failure has been a devastating shock. His Mum, Michelle, never left his side in the past three years, come rain or shine. I can't stop thinking about her and how she must be feeling. There aren't any words for her loss or anything that can make sense of it. All I can do is squeeze Elin a little bit harder tomorrow and remind myself (as if I need reminding) of how lucky we are and make sure we never forget Michelle and the beautiful boy she was blessed with for far too short a time. God bless you Charlie Bear and your Mummy who never, ever gave up. You will both continue to inspire me every single day.