Living with Cerebral Palsy 🍋🍋

Tuesday, 24 February 2015

Party Time

Pinched this from a fellow parent. A lovely piece. Elin gets invited to a good few parties but I have to admit they are mainly those of her friends at her SEN school. I remember specifically the last "able-bodied" party she was invited to and a friend of mine had chosen the venue (a play barn) because there was a section with disco lights and a bubble machine and she knew Elin would like it. It touched me so much that she had considered Elin in planning her daughters party. It was years ago now and I don't think it would be as easy these days to manoeuvre Elin up the flight of stairs to get there, nor am I always in the frame of mind to sit in one of those soft play centres watching all the children play around her, silent and still as she tries to adjust to the noise and the chaos and I try and heave her in and out of the ball pitt . Anyway I was moved beyond words when my friend considered us but also genuinely not in the least bit offended when others haven't along the way, I completely understand the issues after all and like I say I don't always feel strong enough to go (buried. sand. head. You know the score) . But this article does surmise my overall feelings I think, about children's parties even if it doesn't relate exactly to our situation, with Elin not being in a 'mainstream' class. Definitely worth a read:
There's a debate that's been aired on UK TV recently about whether schools should allow birthday invitations to be handed out in class if not all the children are invited to the party. Obviously there are plenty of sides to that debate, both practical (maybe you can't host a whole class full of kids), particular (do you have to invite the kid that bullies you), moral (why is it any of the school's business - though they're only suggesting a rule for what happens in school) and emotional (isn't 5-11 years of age too young to learn such cruel lessons about exclusion - can't we save those a little longer?)
It's drawing in a lot of people because, as every parent knows, there are few injuries that can be done to you that are as painful as seeing your child left out, disappointed, hurt without understanding why...
As the parent of a little girl (aged 9) who received her only ever invitation to a school friend's party five years ago the discussion hit me hard. I know at school she must hear the children talking about parties, who went, what they wore. She can't ask me why she's not invited, and honestly, if she could I wouldn't know what to tell her - I can imagine few more difficult conversations.
Celyn has her own birthday parties and I'm more grateful than I can say that each year six or seven little girls turn up and light up her day for a few hours. It's frightening to think how much I'd pay them to come if that were necessary and an option.
I understand the reasons she's not invited. People are awkward around her disabilities, worried they might have to cope with something, worried perhaps that we might just leave her for them to look after or that the presence of her carer would spoil things... I understand all that and I can't condemn it. But I think that when those girls are grown, if they could look back at their parties and remember Celyn was there - they'd feel better about themselves, about their parents, and they'd be better people. So perhaps those mothers could think of my daughter as an opportunity rather than a problem.
I know that the hard lessons have to be learned, that they can't be put off forever... but doctors and statistics tell us that Celyn is unlikely to ever be an adult, and for me, knowing all the shit she has to put up with and that she's already had to come to terms with... I'd rather see her life punctuated by parties than by disappointments.


Friday, 20 February 2015


...That I haven't updated sooner! We've been very busy doing nothing!! Well, not really nothing- visiting family and friends and lots of playing, but nothing major to report! Elin had a sleepover with Nanny and Aunty Karen on Tuesday night which was very exciting for her and the little monkey slept much better for Nanny than she does for us! Hmph!! We got away for the night (a hotel/spa break which was my Christmas present and given the few weeks we've had I did wonder if we'd manage it) and had a great time. Highly recommend the 'Titanic' hotel at Stanley Dock, Liverpool. It was awesome! The pool especially was pretty wonderful! It was nice to get some relaxation in after the last hectic few weeks and I found myself thanking god for mobile phones yet again, which basically allow us these breaks without having to worry we won't be able to be contacted should anything crucial with Elin arise (which of course it never does but you know, it's nice to have that security blanket.) She had a pretty great time without us too I think but it was very nice to see huge smiles on our return! We missed her. We haven't been away for the night on our own without her for 12 months and it felt a bit weird, but important I think, for all of us.
Since then Elin has been enjoying, amongst other things, having cuddles and a Tiara present from her lovely little friend Henry,  standing frame/disco light fun and being squished by Daddy on the sofa while he works on the laptop (yes, this child is nuts). So I'll leave you with a few pics to keep you Elin fans going and hope that those of you who have also been on holiday have had a great time too.
Lots of love xxx


Holiday pics- We walked the Tate Gallery on the Albert Dock and honestly the best thing I saw was this window! You can just make out the Ferry on the Mersey through it. Beautiful! 

THE POOL! Looked a bit like the Cavern Club, but with water. Absolutely loved it. Deep breath...and relaaaaaaxxxx......


Saturday, 14 February 2015

Two Valentines and a Funeral.

Well, Elin had not one, but two Valentines this year! Gifts from two gorgeous lads in her class, what a lucky lady! Of course, as regular blog readers will know, he heart belongs to Llew though. She sent him a Valentines too and a 'best friend' Valentines to her other suitor which Elin and I agreed was a nice compromise so as not to upset him too much :-) I think it's amazing that other parents and the school staff engage in this exchanging of tokens of love, its just another way of treating the kids the same as any other and as a Mum it is so cute I could cry. Why shouldn't Elin have a Valentine after all? She's definitely loveable enough :-) :-) So it was lovely to receive these gifts yesterday and we both had a bit of a tear in our eye as we displayed them in her room I have to say.
However, it was a   bit of a bittersweet day today. February the 14th is usually a day for love, and today was no exception for us, but in a slightly different way than you would hope. Today was the funeral of Paul's Uncle Stan, for those of you who remember my post about Paul's two amazing Aunty's from Liverpool, Stan was married to his Aunty Sylvia. He died last week at 89, a couple of weeks shy of his Diamond Wedding Anniversary.  He was born and bred in Liverpool, right next to Anfield on Sleepers Hill. In a close family he was much more than just an Uncle to Paul and his two brothers and he was a wonderful father to his own three sons. Stan was the most gentle and caring man you could meet but he was also hilarious, adopting that dry Scouse humour that is so unique to the area. He would literally have you in tucks. Of course, arriving somewhat late to the extensive Drake clan I didn't meet Stan until he was already 75. It was amazing today to learn so much more about him (particularly as a young man) and I realised I was hearing stuff I had no idea about as is so often surely the case when a life of 90 years is condensed into a few minutes of speech. He served in the Merchant Navy from 16 years of age, earning many medals. 30,000 Liverpudlian Seamen were killed on the Merchant Ships during WW2, which is a figure I can hardly comprehend. Stan was not one of them, thank god. After finishing in the Navy Stan spent the rest of his working life as a printer alongside Paul's Dad Tony, who got him the job. ,He had many hobbies and adventures throughout his life. But the true love of Stans life, as anyone who knew him would have told you, was his family (closely followed of course by Liverpool football club) . I had thought that it was incredibly sad to have a Funeral on Valentines day- completely incongruous . But I was wrong, it turned out to be probably the most fitting. On a day meant to celebrate love (according to Hallmark at least!) I think we did end up celebrating the best kind of love. Selfless, enduring, gentle, humorous, proud, unassuming and strong. And that was Stan, that's how he was. Did everyone talk today about how good he was at his job, or how much money he had or how many holidays he enjoyed or whatever? No. We all talked about how he loved and was loved and how he made us all split our sides with a strategically placed one-liner, right up until the end. The values he gave his sons, the legacy he created with his love of life. On Valentines Day I don't think we could have witnessed a more appropriate message.  Stan  contributed so much to Pauls life growing up and all the surrounding family. His love will go further than he will ever know.  As the Captain of the many Merchant Ships Stan sailed during the War would announce at docking into port every home-coming "Switch off the engines. Your work is done" .
Stan, your work is definitely done and none of us will ever forget it. Thank you.


Saturday, 7 February 2015


A picture paints a thousand words......


Tuesday, 3 February 2015


There's a teenage phrase going around at the moment "OMG I can't even". Usually you see it written on Instagram snaps under pictures of Harry Styles or Channing Tatum or whoever. It's one of about a million things 'the kids' are saying these days which actually make no sense. And by no sense, I mean no grammatical sense, since it's clearly an unfinished sentence. Obviously they make sense to me because I am TOTES down with the kids and I understand teenage-speak because I am ON POINT and still a mere 33 years young which is nearer to teenager-dom than middle age, right? RIGHT????.Anyway to those of you who prefer to use actual, proper grown up language -this phrase, as I understand it (and I do, because I am uber cool), means you have no words. As such it is quite evocative in its simplicity, which is why I like it. Plus it sums up the past couple of weeks perfectly for me (you knew there was a point to this).

OMG I can't even.

So basically Elin has been in and out of hospital a fair few times with two ambulance rides, two overnight stays two x-rays, several blood tests and a billion stool samples (FUN!). The bug that I have been blogging about since Christmas never really left. Or if it did, it left momentarily and came back with a vengeance and brought it's nasty cousin along with it. To cut a very long story short Elin is now on two lots of antibiotics, for an intestinal infection and a suspected chest infection. We went round in circles with the medics for a while as Elin was foxing everybody somewhat. But as always we got there in the end and the fab staff on Children's Ward sorted her out. I HOPE! This has been going on waaaay to long and we can't really remember such a bad winter period discounting the great Dystonia plague of January 2013. I literally feel like I have been dragged through a hedge backwards and slapped in the face with a wet kipper a few times. It's quite exhausting when she isn't well. And if I feel like that imagine how she felt :-( :-(
Anyway as I emerge, blinking, into the sunlight (shut up! Im not being dramatic! I feel like I've been stuck in a  room for seven days which I have in one way or another!) I can only pray to the gods of all that is fair that this is over for Elin now. She doesn't deserve it and has been so brave, too. She went back to school today and I left her laughing her head off which is an excellent sign in itself since we hadn't seen her smile for a week or more until Sunday. Yesterday she stood in her frame for ages and it was great to see her so happy again. She looked amazing in her frame and as I took the obligatory photo's that I seem to chart Elin's every waking minute with, a phrase popped into my head to describe how I felt...

OMG I can't even.


Tuesday - Getting low temps and sleepiness checked out.
 Big smiles for Daddy, Discharged in evening. Yay!

Wednesday- Ride in Ambulance. Low sats, extremely
low temperature. Unable to wake up.
 Cuddles from big sis. Temp erratic. Overnight stay,
                        Thursday. Awake. Enjoyed visit from Aunty Karen and lovely School staff . Still no smiles though.

Just chillin'' in bunny ear dressing-gown.
 Playing 'Talking Tom' on Mummy's iPad. Feeling better. Going home again soon- yay!
Uh-oh. Saturday. Another Ambulance ride after de-satting and plummeting heart rate. Eek. Stayed in for another sleepover. Got to see one of our fave night Nurse's for first time in ages, yippee. Every cloud. (If you're reading this - You should TOTES go for it, I have a good feeling.......... )

Sunday. Home again, home again, jiggety jig. Two lots of antibiotics, a changed feed and inconclusive tests results.

Watch this space.......
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