Well Hallowee'en has scarily returned the monster dystonia to our door. Shouldn't be surprised really, it has been a week since we saw it's ugly face! This crazy good week/bad week cycle may be set to continue for a while longer, then (can it just be coincidence, or something else?? Right now it seems completely stuck on a cycle, but why or how we just have no idea. It makes no logical sense. More questions for the Alder Hey doc in December methinks). Despite a renewed inability to sit in her chair, we did manage to get a little trick or treating in today! Well, sort of trick or treating- we went to the village and visited our friends in the Chemist, Hairdressers and then we went to Nanny's house for a lollipop.
Have a good weekend blog fans, may your Hallowe'en be monster free (and full of lollipops too)
The good spell continues for Elin- yay! In contrast to the crazily warm temperatures of yesterday, we awoke to a decidedly crisp Autumn day today. We didn't mind, because Elin looks so cute in a hat (see exhibit B). We went for a traditional family outing to Llangollen and Elin had a great time listening to the river and feeling the wind on her cheeks ;-)
Exhibit B. Cute.
Baby Gruff is going back home to Brighton tomorrow, Elin is going to miss him lots. She liked feeling his little fluffy egg head tickling her face when they have snuggles, but mostly she will miss him crying which she finds hilarious. Until next time Gruff, hwyl fawr rydan'in dy garu di :-)
Drake towers has a little house guest this week. His name is Gruff (for you English folks, it's pronounced 'Griff' lol). He would like to say hello to you blog fans:
Gruff Paul Georges Drake is 12 weeks old today and the latest addition to the family. Living in Brighton, this is Gruffy's first visit to Wales, so it's a big deal. Elin thinks he is pretty awesome:
On the subject of Miss Drake, the proverbial corner has definitely been turned for half-term. She's been amazing. Back to long walks in the buggy and trips out. Today she took Gruff to visit a bona-fide Welsh Castle!! We have been so lucky, given what a bad place she was in just last week, dystonia-wise. Fortune must be smiling on us!! Thank you, fortune. Hopefully more half-term adventures to follow, but in the meantime here are some pics of our day xx xxx
Oh-and on the way home Elin decided to call in and see her Great-Nan and Great-Grandad. They were both pretty chuffed to see her so happy! Couldn't resist sharing this video of her responding so brilliantly to my Grandad's old favourite 'Round And Round The Garden'. Please excuse his comb-over but he is 83 after all and we interrupted him having forty winks ;-).
This is utterly heartbreaking, whatever your views it certainly raises some important questions on the 'Right To Die' debate. These parents are very brave for opening themselves up to potential criticism by wanting to get the issue into the public domain via the media. Hopefully it will stimulate important and necessary debate amongst the 'powers that be'. I don't think it's a position anyone can judge until they are in it themselves. I cannot imagine what it would be like for us to watch Elin in constant pain, it would be something I don't think any parent could deal with for more than a day or two let alone a lifetime. God bless you Nancy and your family, going through something no family should ever have to :-(
Happy half-term! Or at least we are hoping it will be! I do love Autumn half-term, this time of year being my favourite :-) Elin continued to have a pretty bad week- one of her worst in terms of the Dystonia. However yesterday brought some signs of improvements and today she is better again. As today was a teacher training day and I was on a course Elin spent some time with her old faithful friend Heather and her three little boys. Blog fans will know Heather was Elin's childminder until she went to school and she is basically amazing. We owe her so much. Anyway Elin got up to plenty at Aunty Heather's -including some Pumpkin carving for which she sat in her buggy for a full 15 minutes-and did a lot of smiling and even some laughing. Given that we haven't really seen 'our Elin' for a good week this was great news and of course I am hoping it means she has, once again, turned that elusive corner. It would be marvellous timing if she has. Fingers crossed.
On a different note, in Heather's absence in Elin's daily life now she is at school full time, she has been lucky enough to acquire another 'Guardian Angel' to be with her when we are not there. Several actually. They are not friends or family, or even people we would ever have known if things had been different. They are the staff at Elin's school. Not in any way obliged to go the extra mile and dedicate every day to her wellbeing with unwavering focus, but doing so just the same. Because. Not because it is a job, or just because they are paid to do it. Because they want to. Because they love to, and they love her and all the other amazing children in their care.
This photo I took this afternoon is for you.
You deal with Elin's Dystonia brilliantly- not to mention everything else- and I simply could not leave her each day with anyone else. I had a dream last night which kind of prompted me to write this. I was watching David Attenborough before bed and right at the end there was a Leopard stalking around. In my dream, this great beast of a Leopard was in Elin's school and nobody knew where he would go next. I somehow was there warning everyone and I shouted to Elin's key worker that the Leopard might come for Elin. (How crazy lol). She picked her up, turned around and began to move shouting to me over her shoulder 'No he won't, not while I'm here' and I swear in this crazy screwed up, funny dream I had utter faith that the Leopard had no chance of getting Elin-because she was with you.
Happy half term to all you wonderful workers and especially you, Elin's key worker, who deserves her own blog post really but wouldn't want it because praise and thanks are not why she loves her job. You all help to give Elin a better quality of life than we could have wished for (it doesn't take a degree in psychology to work out what my dream meant!) Have the break you deserve and I hope this photo goes some way to starting off your holidays on a positive:
Not been a good weekend for baby Drake. Lots of Dystonia and wide-eyes :-( Unable to sit or tolerate any demands at all, she has been cuddled all weekend and passed between the two of us continually like a hot potato. However for the past two nights she has enjoyed listening to Daddy's guitar whilst she falls to sleep, the Dystonia finally releasing her from it's grip and into the land of nod instead, and I got it on video tonight (and managed not to sing and spoil it this time!). So sweet. We're keeping our fingers crossed for improvements this week. I'll keep you posted ;-)
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!!
...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!!!
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
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!
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