Living with Cerebral Palsy 🍋🍋

Wednesday, 23 December 2015

My Christmas Wish...

I dreamt last night I had a baby girl and she was healthy and she cried when she was born and I was delirious with joy because in that second, even though I was fast asleep, my sub conscious saw a million doors open that had always been closed to me. Waking up was hard. I try not to think about the what-if's. But then almost immediately I remembered how I spent so many Christmases wishing for you and finally you came and showed us all what a Angel really looks like. I hate it when people say special children were sent to special parents who God knew could look after them. Because I think it's the other way round. I think you were a special Angel sent to watch over us all, instead. We are so grateful you are here. We love you so much Elin. The best little girl in the world. Merry Christmas.

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Sunday, 20 December 2015

Two Christmas Angels

Well in the official start to our Christmas (Elin's school Christingle service) she was the most beautiful Angel we have ever seen! An absolute joy to watch her smiling and laughing her way through the performance . Then, last night on Welsh T.V Elin's sister Caitlin proved again she has the voice of an Angel with a beautiful, original rendition of 'In The Bleak Mid-Winter'. Elin has already watched it several times this morning and absolutely loves it. Hope you do, too. Merry Christmas everyone xxxx



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Thursday, 17 December 2015

Diamonds on the soles of her shoes....

Phew! It's been a very hectic week in the life of Elin! She has had two appointments which we have been waiting quite some time for- both of them at ALAC (the artificial limb and appliance service) which basically deals with splints, shoes and wheelchairs (as far as Elin is concerned anyway). To use a topical Star Wars analogy, one appointment was very kick ass Storm Trooper style and the other was as dark as Darth Vader :-(
The new wheelchair assessment went brilliantly. You will remember after her chair breaking we borrowed one from a little friends of Elin's- and we have noticed much more success in terms of sitting since using it. It's called the 'Chunc 45' and I went to the appointment on Monday expecting to have to persuade them to let us have one of our own and perhaps even to fight for it. I needn't have worried. The lovely new O.T agreed Elin looked great in it. It what is traditionally a lengthy appointment, Elin was amazing. She sat beautifully and literally grinned all the way through (see exhibit A). Phew! Our next appointment will be attended by a rep from the Chunc company and we are hoping that it won't be too long before Elin has a brand spanking new are to measure chair :-) Yay!

Exhibit A:

a


Two days later came the second appointment, this time to pick up some shoes. This should have been a five minute appointment. We have been waiting for the shoes since August. I kid you not. You will remember Elin was measured for some splints back in August, which arrived sometime later, minus any shoes to go over them. Why splints are ver provided without suitable accompanying footwear is beyond me, particularly when the splints are specialist and an extremely funny shape.  Anyway a pair were ordered at my request and in the meantime Elin had to wear a pair of sleep socks over her splints, until we realised her old horrendous Spice Girl style moon boots just about fitted over them. So for weeks on end she's been going to school with feet Buzz Aldrin would be envious of. Anyway finally we got the appointment to go and pick them up at 8:40am the week before Christmas. Guess what. They weren't there. The orthotist was very apologetic, the company had let him down. He had managed to find some makeshift shoes from Rhyl's ALAC bless him, all of which were uglier than a monkeys armpit. As it became clear we were going to leave with a black pair of boots that would have been more at home in the suitcase of a WW2 evacuee boy, instead of the pink, fitted pair I had promised Elin for Christmas, I couldn't stop my tears from falling. Why should Elin have to wait four months for shoes?? Why should she get ugly horrible one's when she deserves so much more? Luckily the orthotist was out of the room at this point (when I say room, I mean a small sweaty cupboard we had been parked in which was less roomy and more sweaty than the Trunchbull's 'Chokey') so I had time to pull myself together. This was difficult however, since the O.T in the next cupboard-sorry, room- who was dealing with an elderly gentlemen repeated the phrase 'D'ya know what I mean?' and 'I'll be honest with ya' to him so loudly and so often during his twenty minute appointment with the poor old chap I wanted to grab Elin's boots and use them as the weapon they had surely originally been intended for and ram them down his patronising, faceless O.T throat.
You have probably deduced I was pretty upset by now. We finally got out of there much later than anticipated and I took Elin hastily back to school. When I got there I had a lip wobble as I showed the staff the evil boots which by the way don't even fit properly (and just in time for her school Christmas party too- grrr!) . I was given a cup of tea and within ten seconds they had me laughing again. Did I ever mention how much I bloody love Elin's school? I think I probably have :-) They promised they would pimp them up with some tinsel or something and I left Elin enjoying a visit from Father Christmas, feeling better.
Well, today Elin came home with a little more than tinsel on her shoes. She came home with this:
More bling than Kim K's wedding to Kanye. Yes, I think this is called 'going the extra mile' which won't surprise long term blog readers who know about Elin's school already. I cried when I saw them and not just because I love them. How do you put into words what it means that the staff in Elin's class not only understood why I was upset about the shoes (and didn't just think I was being hormonal and bonkers) but took the time to do something about it for us?  You can't put it into words. You just have to say thank you.
Thank you for getting that this was about so much more than just shoes. Thank you for getting that shoes are and always have been my achilles heel where Elin is concerned. No girly Lelli Kelly's, no ballet shoes, no old fashioned mary janes, no cute little wellingtons, no cool converse, no comfy slippers, no pretty pumps. I can't even look at girls shoes in shoe shops- seven years on. Who knows why the little things hurt so much but sometimes the little things are the hardest to deal with. I just want my daughter to have a pair of nice shoes and I have zero control over this. She looks so beautiful and then she may as well have a neon sign hanging over her feet saying 'look at my twisted, poorly, disabled feet everyone!!!' It makes me weep, literally. Always has done, regardless of rationality.
So a few sticky diamante's went a long way today and patched up a tiny crack inside my heart. It's the little things.
Thank you.
xxx

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Saturday, 28 November 2015

Looking up..


These gorgeous pictures were taken last night just before bed. She doesn't look too sleepy does she?!? However, I am pleased to report a slight improvement in Elin's sleeping pattern this past week! Yay! As in, she is still being  a monkey regarding the sleep situation but instead of playing up every night it's every other night or even a couple of nights apart. She even slept ALL NIGHT on Monday and Tuesday. Go figure. We have no idea why, or what has changed. But we like it! Thanks Elin! It's about time! We feel a lot better because of it (and probably look a lot better too!) How can you be upset about being tired when you see this face though?? Her smile makes every lost minute of sleep worth it! We will have to see what this week brings but hopefully more of the full night's kip and less of the partying in the wee small hours!!
In other news Elin had her annual school review this week. It's kind of like a parents evening, except it's not in the evening and you get waaaaaay more than a ten minute slot to discuss your child. Due to the nature of Elins education there are also a great many professionals invited, other than just yourselves and the class teacher.  Well, it was pretty amazing! It was fantastic to be able to discuss Elin's achievements at length- and there have been many! Sometimes we forget how far she has come even if the last twelve months, she has come quite a way! We were so proud and it was lovely to hear how proud the staff at Elin's amazing school are too! I will leave you with one of the pages from Elin's report following the review- it's my favourite ever because of the last statement. Too, too cute! Have a good weekend, folks.
xxxxx

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Sunday, 15 November 2015

Sleepy Hollow...

I have been trying to write this post for a while but...I've been too tired!! One of the things we have to deal with on a regular basis as Elin's parents, yet never really take the time to stop and consider, is prolonged sleep deprivation. Apparently, sleep deprivation is extremely common in children with profound and multiple disabilities. There has been a report by Family Fund, a charity for families of disabled children, which states that 93% of parents of disabled children are up in the night with their child. 49% of parents experience health problems due to lack of sleep. 22% experience tiredness at work and 11% of parents have relationship problems. None of these statistics surprise me. Something that completely blindsided me as a Mum of a severely disabled child was the sleep deprivation. This is because it was largely unexpected, unspoken and there is not a lot of information about it. We were told when Elin was tiny that she would never speak, walk or even see properly. We were told she would be in and out of hospital a lot. We were told her health would be extremely precarious and that we would be lucky if she reached adulthood. We were told she would be on many, many doses of medication daily (thirteen if you are asking). We were told she may not ever truly 'know' us, that she would be tube fed, incontinent and suffer form seizures her whole life. But what nobody told us (and given the seriousness of that list, it certainly pales in comparison in terms of severity I guess) was that she wouldn't sleep. Now, Elin has never slept. It's nothing new. In the early days we had so much to consider, worry about and mull over that the sleep issue was never top of our list. We took her to a cranial osteopath at three months old and it helped a little but it was far away and the journey would upset her so much it almost wasn't worth it. Then, she was admitted to Alder Hey at four months for an operation and they prescribed sleep medication that seemed to help a lot. Suddenly Elin went from sleeping two hours a night to having a relatively 'normal' few hours at a time. We were still up about twice a night, but she was a baby, this was normal, right? Seven years on and absolutely nothing has changed. We often say if we had not been to Alder hey when we did then have no idea how we would have carried on. Paul couldn't even go to work it was so bad. So, the new version of our nights involving only getting up two or three times to Elin seemed like a massive improvement and we didn't complain, we just felt lucky we weren't the walking dead anymore.
But...when this goes on for years and years it can be very difficult. You get used to it, of course. But then when something knocks Elin off kilter, such as an illness, the whole sleep patterns gets lost into the realms of newborn again. Except maternity leave finished six years ago and life has to go on, for us and for Elin. At the moment we are stuck in one of those patterns. Following Elin's illness some four weeks ago she hasn't had a single good night. This means being up three or four times and eventually giving in. Giving in means she comes into our bed, which usually does the trick and she falls asleep. Only ever for an hour or so, then another wake-up. A shift of position or a cuddle and you might get another half hour out of her.  I thank my lucky stars she's still small enough for us to carry into our bed. I dread to think what we will do, short of winning the lottery and buying a kingsize bed with a hoist over it, in the future when she has a 'bad run' of sleep. Anyway, suffice to say Holly Cottage has been a very sleepy little hollow lately. I hear myself telling people I am tired and think how pathetic it must seem. Nobody likes anyoe moaning that they are tired. But even the word 'tired' doesn't really do justice to how you feel. It is exhaustion, more probably. The exhaustion of having the strange combination of a seven year old with the sleeping pattern of a seven week old. She still needs medicating, feeding and nappies changing too of course and that can add an extra layer of complications when trying to ensure she has a good few hours.
What's not helping Elin at the moment is thats he needs an ENT referral - I am convinced her sinuses- like mine- are blocked. She also has a strider (when wind passes over the larynx creating a squeaky sort of noise) which can be very noisy at night. We are wondering if her teeth are coming through behind her baby teeth and part of us is also wondering if she is being a little monkey, frankly. We will never really know what causes the increased sleep issues at any one time, we just have to hope they won't last long.
The only way I can describe how I feel sometimes trying to deal with this prolonged lack of sleep is that I feel like Im walking underwater. Everything feels slightly distorted. Everything is out of proportion, including my emotions.I will cry at the drop of a hat. Work becomes something to survive, rather than enjoy (yes, I normally enjoy work -most of the time anyway ha!!) . Meals are not cooked -Paul is the cook but when sleep deprived he rightly doesn't feel like chef duties! We share the lack of sleep in our house just like we share everything to do with Elin . You eat fast unhealthy food and feel bad because of it. The house is not tidy,  phone calls are not made, texts are not sent and things are forgotten or just sidelined due to lack of energy or required brain function to complete a task. The internet replaces a beloved book as a comfort and escape, because there is no concentration left in you and it feels easier to swipe over stories about Kim Kardashian than it is to escape into a truly enjoyable world that might actually take your mind of things better than stimming on an iPhone screen ever could. There is a constant sick feeling in the pit of your stomach which sometimes affects you physically (I won't go there) and you feel like half the person you know you can be, with the face of somebody twice your age. Going for a run, which usually makes you feel good, renders you incomprehensibly shattered. You start to feel lifeless. But you have to keep going. Work, social stuff, Elin's appointments, shopping. None of it is going to go away just because you're not getting any sleep. All I can say is thank god I only work part time, there is simply no way I could get through it all otherwise. I can totally see how the stats at the start of the blog have come about. Support and understanding, not only from each other but also friends, family and work colleagues is paramount in retaining your health, sanity and relationship. Thankfully, it is undoubtedly this support, in all its forms, that Paul and I have. We are very, very lucky in that respect.
I'm not telling you this, lovely blog reader, for sympathy. After all, like I said it's been something we've been living with for seven years. Sometimes you forget about it completely, because it is simply the norm. When you've so many things to think about and worry over, sleep is often bottom of the list when talking to doctors, professionals and even other parents. Im just telling you simply because I know you read this blog to understand, and I want you to understand, a little more about life with a child like Elin. That means the many positives and the negatives too. Also I want you to forgive me. Forgive me if i forgot to return the call or the text. Forive me if i snapped at you a little or I didn't talk much today. Forgive me if I had to leave the party early, or I couldn't drag myself out for the girls night. Forgive me if I can't always give you good advice about your own problems because I do care. I DO. Really. I just don't have any space in my brain left sometimes. At all. I can't form the words, I can't link my brain to my mouth.( I become, at the very worst, something the old me never would have accepted- I become a bad friend.) This is not an exaggeration, it's the absolute truth. I'm just trying to survive the day. And sometimes, as insomniacs will tell you, that's all it feels like you are doing. Surviving. 

This was taken at 4:30 a.m in our bed. Monkey!!!

NB In case you are wondering, as I know you will be Elin fans, how all this affects Elin, well...it doesn't seem to! She has been one happy little bunny the last couple of weeks. That, at least, is a blessing and a silver lining in the cloud that descends over our little cottage at night time. Would that we could have her stamina!! Anyway night night for now, please keep your fingers crossed for us that things change soon or I'm going to have to start saving for botox, sharpish. My eyes have more bags than Manchester airport. Thank you, friends, for the continued support. May your sleep be long, uninterrupted and peaceful for as long as you need it to be :-) 
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Sunday, 8 November 2015

Baby, you're a firework

So Bonfire Night is another one of my favourite's! Goes back to the time when my Dad would squeeze us under the fence at Bellevue Park so he didn't have to pay for us and we got to stay up late, go out in the dark and eat Bonfire Toffee. Pretty exciting. But the fireworks are always the best! So I was pretty delighted when the Chester Lions asked Caitlin to sing at their annual Firework display tonight, since I haven't been to a display for years and it seemed like the very best excuse to go! Of course, the reason I haven't been to a display for years is little Miss Drake. Cold, dark and loud bangs are not three of Elin's favourite things and it didn't seem fair to drag her out for our own benefit. But thanks to my Mum who was able to look after Elin , I finally got to see a Bonfire Night display for the first time since I was pregnant. It was brilliant and Caitlin was amazing. She did two fifteen-minute sets and the second one was at 7:00pm just before the Mayor opened the Firework display. It was really lovely to see a load of strangers pull out their mobile phones to film her singing!! Of course I didn't manage to get a full song on my stupid phone but I did get a clip for you, blog readers (see below). However, despite all of this the night, as ever, was tinged with a little sadness for me because once again I found myself feeling incomplete and as though something was missing. It was. It doesn't seem fair that Elin has to miss out-that we have to miss out -on enjoying yet another family  experience. A tradition passed down through the generations, another tradition Elin can't be part of. I try not to let it bother me because these things pepper our lives so frequently that if you truly let them bother you you'd never be happy! But I also think it's important to acknowledge your feelings in order to accept them and move on. So move on we do, through life with Elin (our own little firecracker) and as a family, trying not to let the disappointments define us. Keep on trucking, Drakes. Despite missing the Bonfire fun Elin still had a lovely weekend. She has been splashing with water toys in a cool tray that attaches to her standing frame, playing on her resonance board, enjoying a visit from Great Nanny and Great Grandad, watching Strictly Come Dancing cuddled up on the sofa with me and having a go in her be-active box. Not a bad deal and she has certainly been very happy- and that, reader, is all that truly matters, because after all,  her smile lights up our skies more brightly than any Firework ever could.


I am very happy this weekend!
Splashing about with her water-activated light toys.


A woefully short clip of Caitlin singing 'Say You Love Me' by Jesse Ware at the Firework Display :-) 




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Saturday, 31 October 2015

Hallowe'en

Well Elin has had a half term holiday haircut- and not before time! She was starting to resemble Rapunzel! She was quite impressed with the end result, I think you'll agree she looks beautiful. The second half of half-term has been pretty quiet for little Miss- we think she has really missed the stimulation of going out to school every day and seeing all her friends and teachers . She did however manage some trick or treating with big sis Caitlin and her boyfriend Connor and managed well in the borrowed buggy too as we roamed the misty country lanes in search of candy :-) She also enjoyed the Elsa pumpkin i craved for her (Yes! I actually did carve it despite some of my friends thinking I had stolen the photo from the internet!! How rude! Was actually pretty easy using a stencil I printed off from a website even for someone as crafty as a gnat like my good self)  Hope you've had a good Hallowe'en blog readers, until next time......








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Thursday, 29 October 2015

Oh brother!

A good few days for Elin over half term! We did end up going to the doctors with her eye, which we've had drops for but it is looking better already. We're also still waiting to hear about her wheelchair being fixed...but that has given us more time to road test the Chunc 45 which was given to us as a 'spare'.  Taking visiting family to Chirk Castle provided ample opportunity for this! First of all we had the usual thrashing around and dystonia. So, out she came for a break and a cuddle on my knee then back in she popped ...where she stayed as happy as larry for the rest of the day out! Yippee!  She thought she was queen of Draketon Abbey sitting in the front room of Chirk Castle showing off her new wheels! To top off a perfect day out we also bumped into our favourite doctor EVER, who had attended to Elin when she was born and in the harrowing weeks that followed. We have continued to bump into him over the years in the hospital and he is so humble, he hates it when we make a fuss of him but to us he is the doctor that saved her life (and our sanity, being the first doctor to prepare us for what lay ahead as opposed to just saying everything would be ok, which it clearly wouldn't). It was great for him to see her looking so happy and relaxed out with her family and it was great for me to be able to tell his wife that her husband saved my little girl's life :-)

Lady Crawley!!


Sunday lunching
 Elin and her big brother Tom - getting his fix of Welsh air visiting with gorgeous girlfriend Hannah from London ;-)
 Tom and Hannah having more cuddles :-) Elin loves having family stay - a nice change from our boring voices/faces methinks!

Family :-)


Happy hal term folks! Elin is very much looking forward to trick or treating- photo's to follow at the weekend! 
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Friday, 23 October 2015

Autumn days when the grass is jewelled

                                                         Did someone say half term? 

Well, monkey-face has not stopped grinning today, despite a case of weird-red-eye-thingy appearing yesterday! She's not been completely right since her illness last week so it's been gorgeous to see her so happy, clearly the weird-red-eye-thingy is not bothering her though if it isn't gone soon we'll need to get it looked at! It never ends! Not a bad week although sadly Elin's chair broke the other day which was a bit sobering as you realise that without her dreaded chair, much hated by her as it is- you can't actually get her anywhere without it! It's daft to say, but honestly when you have a disabled child their chair is such an extension of them (because it has to be) that when you suddenly don't have it you feel quite stranded and weirdly vulnerable!!! I have to say hats off to the wheelchair service who sent a repair man out the very night we called, though the guy could not fix it on the spot :-( So they took the chair away and told us to call for a replacement in the morning which would be whatever they had available and probably nothing like Elin's chair (which was made especially for her and moulded to her body). LUCKILY a wonderful Mummy we know with a son like Elin had a 'spare' chair hanging around the house and offered it to us straight away. After a couple of hours of Daddy Drake attacking it with his allan key and oofing Elin in and out to ensure a good fit, she had a new makeshift chair- the 'Chunc 45' (apparently worth a lot of money) and I got to tell you blog readers we LOVE it! (So far!) Photographs of her in it will hopefully follow this half term! I feel a call to wheelchair services coming on ......
Anyway aside from a broken chair (Elin) and a broken windscreen (me) it's not been a bad week. I can hardly believe it's half term - it's crept up on me I think because September was so sunny!!! I'm not complaining,  because I know how lucky us teachers are to have time off with our kids so regularly- I love Autumn and dark nights and coal fires and... Hallowe'en!! I love it!! So now we have a week off with some really nice things planned and are very much hoping Elin maintains the mood she was in today - that will make a very nice half term indeed :-)
Happy holidays everyone
xxxxxxxxxxxx



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Sunday, 18 October 2015

Holding our breath..

Sorry lovely readers! Yes, it's been a while since I updated again, apologies! I was busy trying to wipe the egg off my face after boldly stating in my last post that things for Elin were better than they'd been in ages! You knew it, I knew it. I spoke the words that should never be spoken. I tempted fate and fate gave me a kicking.
Actually, Elin hasn't been all that bad. But we did end up having to stay in hospital overnight for the first time in a loooooong time. Basically, the Autumnal bug got her! A cold and cough can just floor her. She couldn't keep her SATS up, so into hospital she trotted for some O2. This happened to coincide with a visit from my lovely Scottish friend Nicola, my Edinburgh University flatmate of three years and the first person I laid eyes on after my Mum and Dad left me unpacking boxes and wondering when the first freshers party would be  in my halls of residence back in 1999. I've mentioned Nicola before on the blog, because she ran a 5K not too long ago for Elin, the proceeds of which we donated to Alder Hey's Ronald MacDonald House (parents accommodation) in Elin's name. Anyway, my point is, Nicola is really lovely friend and I love her to bits.  We don't get to see too much of each other anymore so annual visits are sometimes months in the making. So it was a real shame that she spent the majority of her visit to us on the Children's Ward :-( But, such is life with Elin and she was gracious enough to say it didn't matter a bit. Who knew back on that day in 1999 as I contemplated how I was going to feed myself for the next three years, was that what Drama school would give me was not a lifelong career in Acting, but a close knit family of lifelong friends. Perhaps, in the University of life, that in itself is more important. Anyway, Im a lucky girl and Elin is too.
Last weekend in pictures:

Elin was very sleepy and needed two days off school at the end of the week. We hoped it would pass! She was glad Daddy Drake was off work recovering from an operation so he could give her extra cuddles.

Oh dear! The inevitable! It didn't pass, O2 was needed. Paul stayed in hospital with Elin overnight which was very hard for me as I am a total control freak when it comes to Elin and it's always me that states over! But we didn't think it would be fair to ask Nicola to sleep on a hospital floor as part of her weekend break, so I had to give in :-) Turns out they were fine, Elin enjoyed having Daddy there and Paul got in a few hours reading his book  throughout the night, not being one for being able to sleep in strange places (I don't have that problem) 


Nicola enjoying her visit to Wales!! (Doh) Yes, I know she looks about 15 but she is actually older than me (bah). I don't know what her secret is, I think it's Scottish air and the fact she only see's the sun about twice a year up there. Also maybe Iron Bru is the answer??


We are going home!!! My beautiful girl breaks out one of these smiles and its like nothing has happened.....


So the story of last weekend finishes with another two days off school, before finally going back on Wednesday where by and large she's been absolutely fine, despite still being a bit bunged up/coughy. I'll try not to speak the unspeakable words again anytime soon and just hope that for a good while that's any poorly-ness out of the way.
I have more to blog about but my bed is calling so I will try not to leave it so long until the next Elin update. Thanks for reading!
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Monday, 28 September 2015

Dismaland

Sorry I haven't updated for a couple of weeks. I should have, because Elin is doing great! Really good. She is (klaxon! famous last words coming up..) enjoying a brilliant run of good health. Maybe that's why I haven't updated much. My blog is always more of a place for fear and frustration by its nature, though I don't mean for it to be. I guess that just what spurs me to write more than when things are going well. Anyway, I finally have something to say.
This weekend I experienced pity from a well meaning stranger. As you probably know by now, pity is not something I am ready or willing to accept. Empathy, yes. Sympathy, maybe. Pity? No thanks. This person was, in the nicest way, saying how hard it must be for us, having Elin. My protestations fell on deaf ears I think, probably dismissed as bravery. Im not brave. It's just I've looked pure hell in the face and we are now so removed from that it's difficult to concede that life is really that bad at all chiefly because..it isn't.....anymore. I wanted to say 'Ha! You think this is hard? You should have been here a few years ago!!!'
 This realisation got me thinking and reading back through some old blog posts from years ago. It strikes me how much more even things are for us now Elin is older. I had actually forgotten what a complete roller coaster those formative years were- though at the time I know I never thought I would forget. We were in such a weaker position than we are now. In and out of hospital so much more. Struggling to understand, comprehend her condition. Researching, appointments in Liverpool AH, continually messing about with medication, dealing with the late epilepsy diagnosis and further the dystonia diagnosis. Bleary-eyed mornings, eventually going back to work with a head full of guilt and worry, whilst all the time grieving. For a child that was never born and for what was robbed from Elin- which becomes a hidden, unspoken grief. It was exhausting. Im sitting here trying to think about when it changed. When things became easier and we got off the roller coaster. I'm not sure. We certainly still visit the fairground from time to time believe me. But the ride is smoother, familiar, less terrifying. There are long periods of wellness for Elin and short bursts of illness- an inversion of the first few years of her life. I go days, often weeks without crying now. Things that used to sting so badly leave me with a flat acceptance instead. Everything is just easier I guess. I can hardly believe the journey we have been on. I can hardly believe it took seven years before we would feel that we weren't hanging upside down from the tracks anymore. But, I'm glad we are the right way up again. Though, I cannot ever hope to completely let go of the pain and shock caused by what happened to Elin , I can hope that year by year it gets a little easier as it seems to have done, which I never would have believed. Today, to continue the theme park analogy, Banksy's fascinating 'Dismaland' is being demolished. It's gothic, nightmarish dreaminess (based of course on a twisted version of Disneyland) is where it felt like we were when Elin was born. We bought a ticket for Disneyland.... but we ended up in an art exhibition that nobody we knew had ever visited, where everything looked vaguely familiar and should have been wonderful, but we couldn't quite recognise anything and it was horrific and distorted and gut wrenching instead.
We are not there anymore.
We're not in Disneyland either.
We're somewhere in between and we're happy.
And you know what, well meaning stranger?
That's more than good enough for me.

http://www.bbc.co.uk/news/uk-england-bristol-34364808

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Saturday, 12 September 2015

Storytime...

Thanks to all those who gave Elin money for her 7th birthday which we used to buy a special MP3 player/Storyphone. This is her doing her best to sing to her favourite song on it, "Funky Monkey" . She also loves listening to Osbourne stories and on a very good day can operate a switch we attach to it to 'choose' what she wants to listen to, or to 'pause' it and 're-start' it. She absolutely loves it and it never fails to maker her smile! Her face visibly changes as soon as it comes on and it is very clear she is listening intently. Cant wait to download some more stories and songs for her ;-)



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Saturday, 5 September 2015

Junior...

Well, after feeling like my right arm was missing on Wednesday and being unable to shake the sick feeling in the pitt of my stomach for most of the day (it's such a wrench after having her with me day in, day out for so many weeks!) Im elated to say Elin's had an amazing first week back at school. We can hardly believe she is Junior-age now (Year 3!). Thankfully she doesn't have to move classes or anything as her class at school is a mixed-age class, but I was still a little worried about the impact of the daily school routine after nearly six weeks off (which must be a lifetime for Elin). I needn't have been concerned- it seems she has settled back in straight away and  her teacher is very proud of her, as are we. I think this demonstrates a maturity in Elin's levels of understanding and more proof that as she grows older, she is able to increasingly make sense of the world around her. It's strange to think that she is in Year 3, since that is the year group I teach in my school. I can't marry the two in my head- the chasm between the children I spend time with at work and Elin is, of course, almost immeasurable. As they pour into my class with their pencil cases and chatter, their brains already wondrously full and inquisitive even at seven years old ("I watch them grow...They'll learn much more, than I'll ever know...") I can hardly believe that my own baby is seven years old herself. I let myself wonder what she would be like if she was in my class right now- the cheeky one no doubt! Of course I will never know. I'm not saying I'm sad about it, it's just an observation really. When I taught Nursery and Elin started Nursery I found it incredibly hard, noticing the differences between her and my four year olds in class. I think there may be a blog post about it somewhere if you go back far enough. But this time it's a easier somehow, maybe time does help to heal a little. I do know what helps is the fact that she has had a wonderful time returning to school as a big Year 3 girl and of course the school itself and staff being so brilliant and expert in dealing with her needs. It's kind of impossible to feel sad, when you have that, because Elin isn't sad. School is her favourite place in the world and if I told my class next week that Elin's timetable consisted of swimming, fun, cuddles, music, stories, sensory based learning, messy play and generally being treated like Royalty they might wonder themselves why going to mainstream school is something to be envious of! In Elin's little life it definitely isn't. She wouldn't change her Year 3 experience for the world and so, neither would I. Time to stop thinking 'What if....?' and continuing to appreciate what we actually have. "You must let go of the life you had planned in order to live the life that is waiting for you". Welcome to the Juniors, Elin. You're going to love it.


First day of Nursery/First day in Juniors :-)



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Saturday, 29 August 2015

Talk To My Daughter.....

Talk to my daughter
Look beyond and try to see
The child that is inside her
Not her disability.

Talk to my daughter
She's a person just like you
Sitting here beside us
She wants to be included, too.

Talk to my daughter
Please try not to feel so scared
Though she can't reply to you
She will feel, and know, you cared.

Tak to my daughter
How would it feel do you think?
To hear voices all around you
But not make that special link.

Talk to my daughter
She's a child, she likes to smile
Hold her hand or make her laugh
Just speak to her a while.

Talk to my daughter
It would mean a lot to me
That you made a little effort
She is my whole world you see.

So please talk to my daughter
You might be quite surprised
To feel such a connection
And see her through my eyes.


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Tuesday, 25 August 2015

It's about time...

Ein's having a good if a little boring week after the excitement of last week! Rain has stopped play on numerous occasions and we have been a little trapped indoors! Never mind. One good thing that's happened is that Elin has FINALLY had casts made for a new pair of splints. Wrexham has lost two Orthotists we have been told, in the past couple of months and have been unable to replace them as yet. This means that an already over-stretched service has become almost impossible to gain an appointment with. I was told to call back every day for the entirety of the Summer holidays in order to get Elin in, and finally we had some success last week. Obviously this can't be helped but it's incredibly annoying. Elin's current splints are no longer really fit for purpose, marking her and not fitting properly. They are important for when she stands up in her frame and also for when she's sitting in her chair- not least because they protect her legs a little when she is having an attack of dystonia on transport! Elin has very awkward legs and feet with pretty pronounced turns so getting splints that are right can be difficult. The last orthotist was brilliant, but sadly she has left. I hope the new splints are ok because it's a long process just getting them in, it can take a few weeks for them to come back once the plaster casts have been sent off.  I did my best to beg a new pair of boots for school too so am hoping she gets the nice patent black ones we requested! Will leave you with some pics of a very good Elin somewhat enjoying having cling film and plaster wrapped around her legs!

xxxxxx
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Thursday, 20 August 2015

Brighton Rocks


Remember my Disneyland posts? You should do, there were four of them and they went on for...ev....errrrr hahaha. Well I think I described a 'good Elin spell' like a harmonious Universe, when all of her planets align and create the best version of Elin there can be. In Brighton this week, Elin's plants aligned. Hurray!!! Definitely no coming home early from jollies for us this time- it was brilliant. Elin was a superstar and even managed to sit in her chair for the majority of the time- only becoming agitated after a full day and lots of sea breeze in her face which is fair enough! We are so proud of her. Not only did she love Brighton but she absolutely adored seeing baby Gruff! Once again she proved to us how much she loves having  kids around. It was delightful to see her responding to Gruff and he to her. Gruff has just turned one and is at that amazing age where he is interested in everything and Elin lapped up his energy. Pretty heart-melting stuff! He is clearly a genius (we're not biased) as he very quickly learned that Elin loves a good nose beep, after seeing us do it he thought it would give it a go himself. Naturally, she was chuffed as a butty by this. I draw your attention to exhibit A:
Yes, we are aware how cute this is!

Gruff aside, Elin also enjoyed a stroll (wheel) along the pier, her first trip to 'Wagamama's' , a spot of shopping, a ride on a carousel and plenty of family cuddles. What a cracking holiday she had. Our only regret was not going for a longer period of time- it's quite a trip down for three nights (one being a stop-over in London with family to break up the journey)! However since we're likely to make it an annual Summer Drakation, we'll know for next time. Thank you Universe for hearing our wishes and granting us a little oasis of happiness this week. It's just what we needed. Until next time, folks...




Oh dear! How sad!


xxxxxxxxx
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Monday, 17 August 2015

Take me to the beach.....

Sorry for the hiatus blog readers- nothing sinister, we've just been having too much fun to stop and post!!! Elin's doing brilliantly after her week of doom! She must have realised it was my birthday week last week and has been good as gold. I had a super birthday- especially as Elin's Aunty Sammy came all the way down from Edinburgh for her annual Elin snuggles! She could hardly believe how much Elin had grown since last year. I forget what a big girl she's getting! Speaking of my birthday you may remember I'm a twin- I have always said Elin looks more like my sister than me (annoying! ha) and my Mum has always insisted Elin is the image of my sister at the same age. So, I rooted around for evidence and found a photo of Karen and Elin, both aged 7:
Wow. Maybe Elin is more Erlandson than Drake after all??? Or just a great mixture of everybody ;-)
I'll leave you with some photo's of Elin enjoying her Summer holiday whilst I head off to pack- that's right! Second attempt at a break and hoping little miss behaves this time! We are very excited to be off to Brighton to play with baby Gruff's fluffy egg head. Yay! Wish us luck, hopefully we shall return with tidings of great holiday joy and some good beach snaps!! Have a good week folks....

Elin and Aunty Sam

Elin and her buddy Poppy




Enjoying one of her birthday presents.....

xxxx

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Monday, 10 August 2015

The Pictures

Today we took Elin to a special Cinema screening for children with additional needs, funded by the fab charity 'Contact A Family' in partnership with local charity 'Your Space'. The film was the Disney film 'Home' about a little purple Alien voiced by Sheldon from The Big Bang Theory who befriends a girl voiced by Rhianna. It was great!!  'Your Space' is based in Black Park, near Chirk, so about a five minute drive from us- perfect! Elin absolutely LOVED it. She got to lie on a bean bag to watch the film and when she got fed up of that she got to lie on me :-) The Reception area after the film was a little cramped for Elin so we didn't stay too long but I look forward to the next event that they organise! There weren't any other children there with needs as profound as Elin's- there was only her and another little buddy from her school who were wheelchair bound for example- but what a lovely idea and a very worthwhile cause to enable families of children with any kind of additional needs to meet. I got some fabulous photo's of her enjoying he film and then made the mistake of plugging my brand new phone into my computer for the first time since I've had it, and I have lost all my photo's from the past few days :-( Sometimes I hate technology. It cheats you! However I did manage to salvage one photo as I had already uploaded it to Instagram! Thank goodness as it's one of my favourite recent Elin pictures and I would have been sad to lose it- we have so few of her sitting happily in her chair! She's been great again today and sitting well which we are really thankful about. A busy week ahead with my friend Sam coming down to stay with us from Edinburgh on her annual visit (and arriving on my birthday yay!), then the 'Cherish' fun day on Saturday and two days break before we head down to Brighton to see fluffy egg head Gruff! It was his first birthday the other day and his head is no longer as fluffy but Elin still adores him! Fingers crossed her good spell continues and we don't have to abandon another break away! I'll leave you with a pic from today of my big, beautiful seven year old baby :-)

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Friday, 7 August 2015

It's over!

Elin is LOTS better. Almost completely back to normal. I'm scared to say it but I think it's over! She's laughing her head off again and generally being amazing. We will soon be weaning down her Dizepam back to what it was before the dystonia went crazy, so I'm really hoping she suffers no adverse effects from that. We haven't tried her in her chair yet so we'll give that a go today. In the meantime here is a pic I took after finishing Elin's physio this morning to keep you Elin fans going over the weekend. Have a good one, folks (and thanks for all the kind messages and well wishes we have received this week)!

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Tuesday, 4 August 2015

You're my world...

"You're my world, you're every breath I take,
You're my world you're every move I make,
Other eyes see the stars up in the skies,
But for me they shine within your eyes,

As the trees reach for the sun above,
So my arms reach out to you for love,
With your hand resting in mine,
I feel a power so divine,

You're my world, you are my night and day,
You're my world you're every prayer I pray,
If our love ceases to be,
Then it's the end of my world for me".

 We're still not out of the woods. She got better, then worse, then lots better, then lots worse. We are currently resting in the limbo that is happy and smily again, no retching but with occasional bouts of bad dystonia coupled with a very gurgly sounding upper resp system. Thankfully not on chest (yet). She's sleeping fairly well again. Paul and I are scared to leave the house now-  someone may try to drive a stake through our hearts. We have forgotten what daylight looks like. What do you mean I'm exaggerating?? I need some Vitamin D truly! I'm using flour as foundation!!!  Ha. It's been a full week now and about time that this illness left our baby alone. Thank GOD we are on holiday from school because getting back to my brain- I can't concentrate. I need Elin to be better! This is not how the Summer holidays are supposed to be :-( Poor, poor Elin. Yesterday I put my mobile in the fridge and tried to put the butter on charge :-(   I can't stop watching her , waiting for a slight change, checking she's ok. I'm having bad dreams,  I'm crying at sad songs on the radio, even my emotion at the death of Cilla on Sunday may have been a bit disproportionate. (Elin is a big Cilla fan. No, really)
But, of course, that smile of Elin's is the sticking plaster I need to hold me together and let me know that she's ok and that everything will be fine, so it's a good thing we've seen it a lot today. Keep those fingers crossed Elin fans, she really does deserve a break now!


What's it all about.....Elin??

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Saturday, 1 August 2015

It's my party and I'll cry if I want to...

Sorry for the few days hiatus! Elin's not been having the best time since my post on Wednesday. The tummy upset has continued (though strangely no diarrhoea at all- just the horrendous dry heaving) and she has been unable to tolerate any bolus feeds. Thankfully, in the last 24 hours, the retching has stopped, though we are still currently putting everything through her pump very slowly to ensure she gets all her fluids and nutrients without it causing her stomach to spasm. Unfortunately, as the retching began to subside, the evil dystonia which has been hanging around in the shadows since Tuesday decided it would rear it's ugly head with a ferocity we haven't really seen since last year. Yesterday she needed knocking out with her rescue meds for the first time since...well, neither of us can remember when! Anyway it was pretty upsetting to see her so beset by dystonia that we couldn't placate her without heavy medication. I can never and will never get used to seeing her in that state. It's about the only thing left in everything we go through with Elin that can still reduce me to tears on the spot. We knew it was coming as there was an extremely slow build up of symptoms, she gradually got stiffer and more shaky as the week progressed and I gradually got more teary and anxious :-(
The good news is, she does seem slightly better today. There has been no retching aside from after giving meds (which have to go down as a bolus) and she has coped well with a gradual increase in her feed-which we are diluting with water to make it more tolerable- via the pump. She hasn't needed rescue meds today, although still severely dystonic we have managed between us with changes in her position, or keeping her on our knee. Also, she has managed her first smile since Tuesday. Tuesday!!! Can you imagine not seeing a smile for almost four days? We're beside ourselves. Also probably a little delirious since we have pretty much been consigned to the front room swapping Elin between us  for all this time. But we've had a fantastic run with Elin, she hasn't been poorly for soooo long and knowing what some parents deal with we know only too well that we can't take for granted how well she has been. I guess we were 'due' a bad week. Thank god for the Summer holidays though!
Today was my birthday day out with my pals. Nine of us were going for the day to Chester on the train for cocktails and a meal and then more cocktails. As anyone with a large group of friends will know, it's tricky to get everyone together on one date. Hence my birthday day out was nearly two weeks early :-) I was really looking forward to it but of course, I had to cancel.  I don't think Elin likes my birthday! (Anyone remember my 30th? Anyone? Yeah. It was BAD). Anyway my friends have been amazingly supportive as usual, calling and messaging, travelling home to see me anyway despite cancellation of bash and two of them brought an afternoon tea to me and a poorly Elin with cute little sandwhiches, scones, fizzy stuff and an amazing cake. I am a lucky girl, I love all of my friends so much. They just make everything easier, you know? Let's hope tomorrow brings the same amount of improvement for our girl. Oh if you're wondering how old I am this time- 34. But I feel 64. Probably look it too, especially this week! Can anyone recommend a good face cream???


Oh wouldn't you know the first smile in four days was for her Daddy? 


 Alternative afternoon tea.

xxxxxxx
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Wednesday, 29 July 2015

Llareggub

We are just back from one of the most beautiful places I have visited in a long time. The Quay Hotel, Deganwy, truly is stunning with it's views across the Estuary on one side and out onto the resplendent Conwy Castle on the other.  It was like being on holiday in the village from 'Under Milkwood'. As I looked out of our patio doors onto the balcony I am standing on in this picture, I could almost hear the dulcet tones of Richard Burton reading Dylan Thomas's lines in his hypnotic welsh lilt. We had a 'suite' (Yes I know!! Not a sofa, actual hotel suite like Richard Gere has in Pretty Woman and everything!!) because there were no family rooms left when I booked so we threw caution to the wind and thought why not???
I'll tell you why not, blog reader!! Cerebral Palsy, that's why not!! We spent a wonderful 24 hours there before having to come home as Elin was suddenly, and quite inexplicably struck with a tummy bug. She gets these random tummy issues from time to time, but hasn't had one for ages. Basically she starts retching (never any vomit since she was four months old thanks to her fundoplication) and can't stomach any feed. The retching is quite aggressive and can be fairly regular. It's absolutely awful for her. She had a tiny bit of retching the day before but nothing came of it. Then, when she slept soundly all night in the hotel we initially felt very lucky (huray! A nights sleep AND a holiday!) but then very suspicious. Usually within two minutes of waking up, she smiles. There were no smiles this morning no matter what we did and this was a huge alarm bell. Soon after, the retching started. It was clear pretty quickly that she just wasn't well, she was sleepy too despite the massive nap! It didn't take us long to decide instead of going to Llandudno for the day, before spending another night in the hotel room bigger than our house, we would have to get her home.
Disappointment, coupled with worry and sympathy (for Elin) does not a happy Mummy Drake make. As Paul started packing I went to Reception to tell them we were going to have to check out a day early. I was REALLY brave (read: not. brave. at. all) My chin started wobbling and I'll be honest with you I stood there in Reception and cried at the poor woman behind the desk. Julia Roberts would NEVER have done that! What a loser. I never cry in public!!! (read: I cry all the time in public, but never before in a hotel). As I handed over my card, paying full price for the whole stay was a final, if fairly insignificant in the scheme of things, blow. I couldn't really think too much about it though cos the Receptionist was distracting me by repeating 'Oh! Don't cry!' at me and I was worried about dripping snot onto the card machine.
Anyway the point about this post is coming, I promise. Whilst we finished packing there was a knock at the door. it was the Receptionist. As I waited for her to say 'you owe us a new card machine, you gave it water damage' she smiled and said she had a word with her manager and he would like to offer us a complimentary stay for the future in lieu of the night we had to pay for but couldn't use. I said 'Omhgghg, wershhhhooo veryryryr grateful thankssshooooo shooooo much' to her (because I was crying again) and she smiled and left.
So the moral of this little story is simply, there are still nice people in the world. Even hoteliers who are under no obligation, moral or otherwise, to turn an upsetting situation into a slightly-less upsetting one. Yay.
Poor Elin is much the same at the moment (I'll keep you updated). We've been here before- usually we simply have to wait for it to pass. Experience tells us there's little Children's Ward can do though we will take her if it continues just to get her checked. The worst thing ever in my world is going a day without a smile and today we haven't had a smile, also watching her struggle with retching is definitely in my top five of least favourite things I have to watch Elin go through. But thanks go to the kind, faceless Hotelier who provided a small ray of sunshine in a bit of a cloudy day. A Richard Gere character in a film, a rarity, a gentleman. Thank you.


A Room With A View, hwyl fawr until next time.

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Friday, 24 July 2015

Wow

Check out Elin's fantastic talking and looking at her new 'Talking Tom' toy! Only sixteen seconds due to my stupid phone memory being too full! I will try and upload a longer one at some point. Elin is REALLY improving in the communication area and we are so proud of her!
video
Oh and whilst I'm here- Elin enjoyed a visit to Park Hall yesterday as a little birthday treat! The fluffy baby bunny was her favourite!


New dark/sensory tunnel! Exciting!


Tractor ride!


Go Karting with Daddy! Oh dear! 

xxx

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