A week of two halves

We are pretty exhausted here at chez Drake! Elin hasn't slept too well for the past couple of days and the dreaded Dystonia seems to be back again, wracking her body with shakes and spasms and stealing away all of her fun. I hate you stupid Dystonia!!
The week started like this with Elin's amazing run of good days continuing into a second week:

and ended like this today after a full day at school for both of us on very little sleep :-(:

Please leave my baby alone Dystonia! How amazing it has been to see her happy for the past couple of weeks and able to tolerate sitting in her buggy! Not to have to imagine her in distress on the bus all the way to school, to take her wherever we fancy going without it being an ordeal for her, for her to be able to experience even just a quarter of what all other kids take for granted, just by being able to sit in her chair. Not to have to watch her little body twisting and straining against itself whilst she tries to work out what's happening. It's not much in the scheme of things. But it's all we want in the world.

I guess you don't always get what you want. Anyway nobody ever told me the world was a fair place. But they did tell me red wine can help with almost anything and now Roy is scattering Hayley's ashes and I can't take anymore today so I'm off to have a glass of it (haha! A bottle-shaped glass!!)

Chin up. Happy Weekend folks.  At least there'll be no 6:45am alarm tomorrow. Every cloud!!

xoxoxoxx

You're so vain...

This is a video we took after school today of Elin laughing..at a video on my phone..of herself laughing!! We caught the tail end of the hysterics. Nothing like a bit of self appreciation eh, Elin! 

Chalk and Cheese

...from last week to this for our girl! It turns out the glass was definitely half-full after all. Elin has had the best week ever, and that's official as her Teacher said so in her home-school diary! My fears that her dystonia was out of control again were so far, it seems, unfounded. It goes without saying how happy this has made us. She is very much herself again and her big cheesy grin is breaking out across her face every two minutes :-) :-) Tonight she absolutely loved listening to Paul play his guitar (yes, he has rediscovered his guitar now but his repertoire still only consists of his three ukelele songs. I'm going to have to get him some sheet music or something because if I have to listen to 'Goodnight Irene' one more time the guitar may go through the window along with the Uke and don't get me started on the harmonica). Anyway, I filmed her amazing response to this which was delightful but sadly I started absent mindedly started singing half way through and you really don't want to hear that.  We do love a sing a long but the Von Trapps we most definitely are not!!! Doh .

So, let's keep fingers crossed that the good mood continues this time and we break this strange one good week/one bad week cycle! I'll let you know!

*Flashback Friday Disclaimer* I've run out of ideas! So, F.B.F is temporarily suspend until further notice!! Sorry!!!

Happy weekend, folks
x

F.R.I.E.N.D.S

There are some friends who are alway there for you. Via phone, text, visits. I am the luckiest person alive as I have so many of those.  There are some friends who live far away, and what they can do for you is limited. But they do exactly what they can, they think of you always and Elin is part of their psyche. I am doubly lucky as I also have plenty of those kinds of friends,too. Some of my closest friends are scattered all over the country, thanks to meeting them at Drama School in Edinburgh many moons ago and us going our separate ways following graduation.  It means we can go twelve months without seeing each other, but when we do it's like we have never been apart.
I lived with Nicola for the full three years of Uni. She was the first person I met when I arrived in the student accommodation in Edinburgh, having just turned eighteen and never really been far from Wrexham in all honesty. My own twin sister could not have really been much further away (Cardiff) and so Nicola and my other flatmates (also on my course) it's fair to say became my surrogate sisters. We learned everything there was to know about one another. We had fun. We looked after each other. We went out together. We stayed in together and watched Ally Mc Beale and Sex And the City box sets. We got on each others nerves. We fought. We fell out.  We cried. We laughed. Fast forward fifteen years and the bond that can never, really, be broken is still there. Two of us are Teachers (and Mothers!) two of us are still acting and making a bloody good living out of it. I am proud of all of us. Nicola (that first person I clapped eyes on so far away from home and one quarter of this fab and sometimes, not so fab foursome living in those slightly rank student flats all those years ago) is raising money for Alder Hey on behalf of Elin right now. Another flatmate, lovely Laura,  raised over £5,000 a few years ago to equip Elin with as much sensory equipment as possible. Five of the six other girls in my 10-girl strong year group (besides my three flatmates) are in constant touch to find out how Elin is regularly, visiting when they can (It probably would have been a full flush of six others but I fell out with one equally strongly opinionated member of the year group on the subject of Maggie Thatcher. You can't win 'em all). I am one lucky, lucky girl to have such amazing people in my life. But more importantly, Elin is.
Please feel free to share this link which leads to Nicola's 'Just Giving' page. She is raising money for Ronald McDonald House (the parents accommodation) at Alder Hey, on behalf of Elin. I have so many stories about how this accommodation has helped parents of poorly children but just believe me, it's a very worthy cause.
I can never get over the kindness of people in relation to Elin, not just dear friends but complete strangers. It touches us deeply. So thank you Nicola and everyone else who has ever supported us. I will never, ever forget what you have done.  :-) xxx
https://www.justgiving.com/Nicola-Cully

Right about now I'm 50/50...

It's not been a good week for snuffle chops. Sophie's untimely demise last week seemed to be the catalyst for some pretty sad luck. Elin's Dystonia returned and then some. It has gripped her for several days, she has needed three doses of Buccal in the space of just over 24 hours and ended up on Children's Ward again on Thursday :-( The pessimist in me thinks that the upping of Diazepam last time this happened has had limited effect and now we are dealing with the fallout of her being on a ceiling dose of a drug that is no longer therapeutic to her. The optimist in me thinks this is a blip and it will settle down again soon. It will be a few more days before we truly discover if my proverbial glass is actually half empty or half full I guess. I'll keep you posted.
In the meantime, despite the odd half-hearted smile this week (VERY few and far between) we have actually had some pretty decent smiles and laughs today- definitely a good sign and something we really needed to see. I know there are some others out there who would like to see it too, so of course I captured it on my ever present camera. Nothing has made me happier all week. i feel like she is back with us when she smiles, however momentarily.
Oh-I missed throwback Friday - as a little boy in my Junior class said this week 'my brain is far too busy'. So I've attached it onto the end of this post. It was a letter I found in my 'special box' the other day. Caitlin wrote it by way of explanation for the extra stocking by the fireplace for Father Christmas in December 2008- when Elin was 5 months old-very cute.
Have a happy weekend folks!
xxx

Throwback Friday

Hooray for Henry...

So, Elin has a little friend and his name is Henry. He isn't even 3 yet but he knows all about Elin. His Mummy is my colleague at work and a very special person. She has always talked to Henry about Elin, right from when he was old enough to understand anything at all really. She bought the book 'Just Because' to read to him and, when she told him he was going to Elin's birthday party this year he thought for a moment and in his two-year old wisdom proclaimed "Elin is a Princess" (just like Clemmie in the story).
Henry picked some lavender and gave it to me because he thought Elin might like to smell it recently. As if that wasn't cute enough, Henry heard about the Sophie trauma (see below) and wanted to help. He wrapped up, in a rather scholastic gift wrap (these poor children with Teachers for parents, LOL!) consisting of a sheet of A4 paper and a plastic wallet, a toy sheep. Not just any toy sheep, but his own toy sheep from when he was little, which squeaks.  He figured whilst Elin was waiting for a new Sophie it might help ease her pain.Obviously, I cried for roughly fifteen minutes about this because it was just so lovely. But more than that I managed to get a video of Elin responding to said sheep (who we have called Sian) which I thought Henry might like to see. It's not been a good week for Elin (more on this later) yesterday being the worst day for her. Literally the ONLY thing that managed to get a response from her was Sian the Sheep. I kid you not. It's almost like she could sense the good karma emitting from Henry's kind gift. So now of course I will share the video and my colleague can show her little boy the effect of such a thoughtful gesture and when Henry grows into the considerate, understanding and kind young man he is surely bound to be become, we can say we are not at all surprised. Because Henry was the sweetest little boy we knew. Thank you Henry. xxxxx

https://www.youtube.com/watch?v=qbPf5JgJDSI&feature=youtu.be

Death of a Sophie....

A very sad day at Drake Towers last week. Sophie died. Regular blog readers will know that Sophie is Elin's little squeaky Giraffe , who has been travelling to school with her every single day for years. She basically travels everywhere with Elin in fact and is her 'object of reference' for travelling-in-chair time. Sophie even comes on holiday with us (you may remember photographs of her frolicking on Blackpool beach in the Summer). Anyway last week I arrived home to a grim looking Paul and Caitlin who gently informed me of some bad news. Paul had arrived home to find Sophie lying in a puddle in the road. It was a hit and run.  She must've fallen off Elin's buggy as my Mum met the bus from school that day. She didn't stand a chance immobile in the road at school-run time. As I gazed on in horror, Paul presented a weak looking Sophie and imparted the even worse tidings- her squeak was gone. They had tried to revive her by drying her out and giving her special squeak- CPR. But it was too late. Sophie as we knew her was no more.
I cried.
Yeah, I know. Ridiculous! Maybe I'm a little over tired lately? But seriously, Sophie has been everywhere with us and we've never once lost her. She's part of Elin. I cried a bit more as Paul and Caitlin began to give each other 'she's gone mental' sideways glances whilst attempting sympathetic noises. I felt not unlike Tom Hanks in 'Castaway' where he swims through the water crying his eyes out chasing after his friend Wilson. Wilson being a basketball he drew a face on and talked to for years whilst stranded on a desert island (don't mock till you've seen the film- heartbreaking I swear). Anyway Sophie was my Wilson. I talked to her, I made her talk to Elin. She made Elin laugh. I was bereft.
Despite my instinct to conduct a full on burial and short service in the garden (Paul and Caitlin by now had gingerly vacated the room, probably to find a phone number for a few men in white coats, leaving me to wallow in my grief) I decided that Sophie could live out the rest of her days in Elin's bed along with Monkey and Easter Bunny. She can still blow air over Elin from time to time where her squeak used to be. Pfffft.
Luckily basketballs and toy giraffe's are a damn site more replaceable than actual living, breathing things. Thanks to the gods of Amazon we are now in possession of a new Sophie with only a two day Sophie hiatus. Don't you just love the internet? But she will never be our Sophie to me, not until she has put in the same time and effort and had just as many adventures as the old faithful giraffe. Welcome to the Drake's (new) Sophie. You don't have to be mad to live here.... but it helps!

Old Sophie accompanying Elin to school earlier this year.

 New Sophie. 

PS New Sophie's squeak sounds different. It's not as good!! Wahhhhhhhhhhhh! WILSON!!!!