Living with Cerebral Palsy 🍋🍋

Sunday, 25 January 2015

Mind Bending

Sometimes I feel quite articulate and that's when I try to write my blog, you know, so that it makes sense. Then other times I don't feel very articulate and I want to write a post anyway. Today is one of those days so please forgive me, but today a packet of Rainbow Drops made me cry. Then I watched Call The Midwife followed by Last Tango in Halifax, all of which made me cry even though I have never even seen the latter before in my life and had to google what was going on. So the chances are I was pretty pre-disposed to crying today anyway. Maybe on another day the Rainbow Drops wouldn't have made me cry. I would hope not anyway since you really can't nip around Tesco in view of all the neighbours you inevitably bump into there with mascara running down your face. Imagine the scene: "Oh hi how are you...oh are you crying? Oh dear is everything ok...?" "Ermm... yes thanks (sniff) I just saw some Rainbow Drops that's all then I bumped into some Strawberry Laces and they finished me off" *AWKWARD SILENCE*  "Ahhhh. Ok, sorry to hear that. Chin up. See you soon byeeee" 
Yeah, it wouldn't really work would it. They'd be carting me off under the mental health act before I got to the checkout. Anyway like I say I certainly don't make a habit of it and it took me utterly by surprise today. Luckily there were no neighbours around to see me and the staff were too busy piling up the Easter Eggs to notice, presumably should there be a late-January rush for  something nobody actually needs until April. But back to the Rainbow Drops.
Sometimes, when you are the parent of a child like Elin, for odd, strange split-second moments in time, you utterly forget that they are disabled. I can't explain it really. It's like because you think about them so often that they are just your baby in your head, like any other Mother or Father you think of them as them and not as a disabled child. This allows very very rarely for small fragments of your imagination to burst through the actuality of what you know in every fibre of your being. It's like a mind trick that Derren Brown would do and you would beg him to tell you how he managed it. It happened to Paul only the other day. He was downstairs very early in the morning and he had left Elin and I sleeping upstairs. I woke up and came downstairs a short while after and he said, that in the morning fog of the brain just slowly waking up, he had a flash of a thought that Elin was coming down the stairs. Just like that, heard the footsteps and thought 'Oh- Elin's up, she's coming down' . The thought must pass through the brain at one million miles per hour. It must be there for less than a hair's breadth of a second, before you realise, of course, that it could never be. You can hardly believe the thought was there..where did it come from? Why did you think that? A milli second of forgetfulness, of thinking of Elin simply as your child and not as your disabled child. It bends your head, let me tell you. It's happened to me a few times too in different ways. Cue Rainbow Drops.
We used to love them as kids so they took my eye today because they are kind of an 80's treat and I haven't clapped eyes on them for years. Then I had my Derren Brown moment. I literally thought, as quick as a flash "Oh my god- Rainbow Drops! I'm gonna get some for Elin!!" which is presumably what my alter-ego would have done, the Mum I never was with the child Elin could never be. As the reality train drew into the slow motion whirring of the station that was my brain, I realised as soon as the thought was formed that of course I wasn't going to buy them for Elin, because she can't eat anything. I mean, she would probably enjoy the crunching of them in the bag, but that's not what my brain was thinking in that lightning flash of a thought. I was absolutely thinking I should just buy them and take them home and give them to her to eat.
Head. Officially. Bent.
So the tears came (and went as quick as the thought itself) with the shock and the sledgehammer of realisation. Like waking up from a dream where she talks, or walks. I don't even know why Im telling you all this blog fans and if you've got this far well done- I think my Nursery class last year have written more coherent passages on the tablecloths at Frankie and Benney's with crayons. But, if you are going about your daily business one day and you spy someone silently weeping whilst staring at an inanimate objects, don't be alarmed. They may just be having a Derren Brown moment of their own and wondering about the power of the mind and how it can, in the space of a split second and without warning, make you stand and cry to yourself in the supermarket.
Damn you Rainbow Drops. I always preferred a Sherbet Fountain anyway.


Friday, 23 January 2015

Great Expectations

Thank Crunchie it's Friday! As I reach for my pint (of Bailey's) I am really, REALLY hoping that we can forget the last few weeks and actually start the New Year three weeks after everyone else.
Elin is herself again. She's smiling, laughing and generally being a cheeky monkey. We literally feel like a weight has been lifted off our shoulders and the fug that has been enveloping Holly Cottage since Christmas is slowly lifting too. Not to be all Dickensian about it or anything , but to be honest it's been a pretty bleak house.
ANYHOO onwards and upwards. We have so many lovely things planned for Spring- not least DISNEYLAND Paris woooo hoooooo!!! So lets re-group now and start again. Elin is so good she was awarded the incomparable 'Top Banana' sticker in assembly today at school. BOOM! Friday starts here folks. Top Banana.


Monday, 19 January 2015

Where troubles melt like lemon drops....

Because we all need a bit of cheering up: Saturday night, Caitlin singing at a birthday party. Yes, she takes bookings ;-) Been belting this out since she was three years old, it was always Paul's Mum's favourite for her to sing. If only Nana Drake could see her now! Elin's very favourite song too. Speaking of Elin, we went to the ward after a terrible night today and the good news is they couldn't find anything sinister and gave her a nasal spray and antibiotics to help her breathe more easily. She does appear to be a lot better today than she seemed at 2am tis morning!! I know you will all join me in hoping that really is an end to the worst bug ever now!!I will of course keep you updated. In the meantime...enjoy.....


Friday, 16 January 2015

Life's not fair...

Forgive me blog, for I have sinned. It's been a while since my lost post.

Someone said to me that they know when I don't post that things aren't too good. Very true. Things aren't too good.

Poor Elin is suffering. This means that I feel like kicking someone's face in. No, that's wrong (and possibly a bit on the violent side). I feel like kicking the face in of the invisible monster that lives with us in our home. The fifth member of our family since July 2008. Cerebral Palsy. But I can't. Like I say, it's invisible. So instead, I push on, struggling to keep my rage at bay whilst a thousand questions run through my head (which surface usually and generally only, when Elin isn't well and I can see she isn't happy).

Why did this have to happen? Why did this happen to her? Kids get sick, I know. But everything affects Elin so much worse. Because of WHAT HAPPENED. Because of the Cerebral Palsy. Because her brain was mashed at the very moment it should have been inflating with its first breath of oxygen and opening up a world to her and delivering the planet a new healthy human being capable of endless and infinite possibility.  Let's face it, if we want to be maudlin tonight (and I do) a winter bug could kill her. It has killed many kids like her and even those we know, and loved. WHY. WHY. WHY.

I can't and shouldn't dwell anymore. She's not panic-time ill or even hospital-visit ill. But she's ill and struggling with a bunged up sinus system and a poorly tummy and that's crap enough for you or I but when you can't ask for help or specify whats wrong, or say what will make you feel better? Torture, surely. And raise your hand if you'd be happy seeing your child in a torturous situation. No. Exactly.

I was going to upload a video I took a couple of hours ago for those of you that I know are missing Elins happy face updates. I don't think I can upload it because potentially it might upset you, blog fan. Her breathing is very noisy and whilst we are certain she is not in danger it doesn't make for particularly nice viewing. But the reason I was going to upload it is because it is indicative of Elin's spirit that today, despite drifting in and out of sleep and breathing like a pig in labour, she was laughing. At her OWN snorting and struggling. Can you believe it? Paul and I are more depressed than a Turkey on Christmas Eve and she's sat there chuckling her head off.

That's Elin.
My Elin.

What a girl.

I will update as soon as I have better news blog readers. In the meantime please keep your fingers crossed or wish upon a star or even pray if you think it will work- that she will get better soon. She's been ill since before Christmas. It just isn't fair.

Sunday, 4 January 2015


We're ready for you. The bug has-all but- gone. The smiles are back. Elin's been sitting in her chair. WE'RE READY.


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