Living with Cerebral Palsy 🍋🍋

Monday, 28 July 2014

Feeling hot, hot, hot!!!

You might think I was blogged out for today but I couldn't resist sharing a couple of pics with you as I know some people will be mourning the lack of Elin picture's recently!
This is a picture of Elin today in her birthday present- a hot tub!! What do you get the girl who has got everything? Ermm... a hot tub!!! We thought it would be like having her own hydro pool in the garden and so far she seems to thoroughly enjoy it! Under no circumstances did we also think it might be quite a nice present to ourselves, it was purely for the therapeutic benefits, honest guv.
Here she is having some light 'physio' (ahem) from her best buddy Megan who turned 8 today. We threw her a beach party and a good time was had by all as you can see. I will endeavour to keep the pictures of Elin enjoying her hols coming as regularly as possible for you blog fans as I know how you all love to see that famous smile- it is brighter than the Sun after all!




Wednesday, 23 July 2014

Leaving on a Jet Plane (part two)

See previous post for part one :-)

Today's the day folks! Well, tomorrow early hours technically but tonight I drive to Manchester to spend the night at my friend's house before we fly off to Palma!!
Luckily for me, Elin is having an amazing week. This does not mean I don't feel guilty for jetting off on holiday without her, but it does make it a hell of a lot easier. I can't imagine going if she was having one of her bad spells. Whilst I am away I will keep the below image in my mind in my wobbly moments as I have just taken it and she is so happy in it. (I thought you might like to see it, too) In any other wobbly moments, I will simply turn to drink. Starting in Terminal 3 at 5:30am tomorrow morning!! My Aunty informs me the beer at the Airport is cheaper than the tea! Well, in that case, it'd be rude not to!
Thanks to Elin's Great-Nan and Great-Grandad (both in their 80's) who went all the way to Llandudno on the train in search of the perfect windmill for Elin!!! She does love a windmill. Also to Tom and Hannah for the beautiful 'Strawberry' dress. It's VERY Elin.

Oh- If anyone is wondering about Daddy Drake's ribs (I am sure it has been keeping you all awake at night) , he is doing fine and has apparently discovered that the acts of a) loudly sighing, repeatedly and b) whinging make him feel a lot better than any codeine could.  YAY FOR MY BOLT TO PALMA is all I can say!

Have a good few days blog fans, Elin is in good hands with Daddy, Nanny, Aunty Karen and Grampy and I hope you stay equally safe and happy until we meet in cyber-space again in a few days!

Viva Espana!!!

Tuesday, 22 July 2014

Happy Birthday

Today is Tuesday, you were born on a Tuesday. How long it feels now since that day. I lay awake this morning as you slept. At 6:28 a.m it had been exactly six years to the minute. Six years ago I floated above my own body and watched in a haze of horror as the medics tried to determine if you had a heart beat then whisked you away from me before I had seen your face. I lay there in the deathly silent room on labor ward as the minutes ticked by, waiting for the doctor to come back in and tell me you never took your first breath. Instead, he burst in and said you were fighting. That was the beginning of the road, the beginning of our new lives, the beginning of you.
Never stop fighting, Elin.
We love you so much.
Happy 6th birthday, baby

We aren't the only one's who think Elin is special :-) Thanks to all for the wonderfully generous and thoughtful gifts -she has been spoiled rotten and we, as always, are deeply touched.

Elin's special birthday song- or maybe it's my special Elin's-birthday song :-)


Monday, 21 July 2014

Open letter to the unthinking.

Dear people-who-don't-know-how-to-deal-with-disabled-kids,
1.Make a fuss of them.
2. Tell their Mum how gorgeous they are (because they will be)
4. Be daft with them
5. Look at them.
6. Ask them what they are doing at school, or any other question you can think of come to that (they might not answer, but their parents will and they will feel like you care)
7. Tickle them, stroke their hands, pat their head.
8. Ask if you can have a hold/cuddle.
9. Smile and laugh with them. Try to make them laugh.
10. Take photos of them enjoying themselves, cos it's cute.
10. Find out what they like/find a favourite toy and PLAY WITH THEM!
11. Don't focus sole attention on siblings of said child or any other children that may be around. They are there too, and just as important! Disability is not akin to wearing a Harry Potter style invisibility cloak, so don't act as though it is.
12. Above all have a bit of empathy and think what you would want if that was your child.

Oh look! How funny/incredible!! The above list could equally apply to any child, disabled or not- who would have thought it? It's almost like I'm suggesting you treat disabled children as you would any child. Fancy that. Disabled children, though perhaps limited in their ability to interact are not newborns that you don't really need to bother with, just because the appear to have limited capacity to understand or respond. They are actually understanding more than you can dream of as you carefully and desperately avoid their gaze. Try opening the lines of communication, you might surprise yourself. You might realise how amazing these kids can be, if you just give them the chance.
I know people from the ages of 8 to 83 who can mange this.
Maybe you can too
Yours Faithfully
Mum-who-can't-deal-with-people-who-can't deal-with-disabled-kids

Sunday, 20 July 2014

Don't rain on my parade!!!

What a day! You know the Glastonbury analogy of the previous post? Clearly I was tempting fate. Rain, rain, rain. For the first time in six years, Elin's garden party had to basically be abandoned. The bouncy castle looked like a foam party (the company must have given it a good wash so the soap suds did not react well to the extra water!!) and let's just say we didn't really need the hosepipe to fill the paddling pool. Elin didn't mind, she thought the sound of the rain on top of the multiple gazebo's was hilarious. Me, not so much. But what can you do? We do live in Wales after all.
With our lovely little home being roughly the size of a matchbox (normally perfectly fine as we are basically a family of 'Borrowers' stature-wise) it was impossible to pull off an indoor party for all of Elin's many fans, so it seemed all was lost. However I'm delighted to say at about 2:30 we had a reprieve. The Sun came out a bit. It stayed out. Elin was in a good mood, though her dystonia is playing her up slightly again (night be time for a slight increase in meds methinks). So, eventually, we got in the garden!! Our family from London who had travelled all the way up especially did not have a wasted journey and ditto our family from Liverpool. YAY! We were SO lucky. I was beginning to feel a major strop coming on (me, not Elin). So we did manage a celebration in the end and what a lovely time we had after all...until the evening time when Daddy Drake cracked two ribs messing about on the bouncy castle with other equally mature male family members (yes, really) and spent a couple of hours in A&E.  Good start to the Summer hols  for him (Paul to doctor: So how long will this take to heal do you think? Doctor: About six weeks.) Oh dear god.
So I will leave you with a few snaps, but of course her actual birthday is Tuesday so more to follow then, especially as we haven't opened any presents yet. If I don't update too often now it's probably because I'm busy filing for divorce whilst Paul lies on the sofa holding his ribs and giving me instructions in his 'poorly voice' (if today is anything to go by!) Still, at least someone got a bit of use out of the bouncy castle! Maybe next year we'll just have a magician instead.......
Enjoy the first week of the holiday fellow school-workers :-)
Thank you to Annabel for the Disney Princess cake it was absolutely delicious (red velvet). Annabel has done Elin's cake every year for free, as a present to her and we are so grateful.

Princess Elin of Ruabon was granted an audience with Princess Tabitha of London on the latter's visit to Wales ;-) Publicists say the two had an in -depth discussion regarding achieving peace in the middle east and also had time for a more light hearted chat regarding their fashion choices of the day.

Me and my girl.

Before the very sad accident occurred (note, lower back in tact and stable)

Take that, weather!! "Aint nobody but nobody gonna rain on my parade!!!"


Friday, 18 July 2014

Throw-back Friday

Arghhh how can it be throw-back Friday day again? This week has absolutely flown, probably something to do with it being the last week of term. Ahhhh, last week of term, how I have missed you! How it seemed you would never arrive!!
The last week of term is always extra busy for us because it means one thing in particular- Elin's birthday bash is approaching. Each year we have a bbq and garden party, it started when she was one and has just become a tradition we can't stop. I think this must be how Michael Eavis feels about Glastonbury-it started off as a fantastic little party pretty easy to organise and manage and then just got bigger, better and required a lot more planning !! Wouldn't change it though and hopefully there will be a lot less mud and rain than Glastonbury, though looking at the forecast I'm not so sure. Boo!
Anyway how could I fail to add some pics of Elin's first birthday for today's throwback?  Please ignore me, I hadn't lost the baby weight (ok, total lie, I had lost it but then I had an awesome time putting it back on whilst I was on maternity leave) and apparently I thought a white-blond bob would be a good look on me (it wasn't, see exhibit A). However, I think everyone will agree Elin looks amazing - in the days when her cheeks would cover her eyes if she smiled. I still remember buying her the dress from Next, I was so happy that she was celebrating her first birthday. Simple as that, couldn't have cared less what the weather was doing or what presents she had or even who could and couldn't come to be honest. My baby was turning one and we were giving her the best day ever- how could you not when it seemed unlikely  at birth that she would make one hour, even?? I was just celebrating the fact that she was having a birthday, another tick on the list and another one in the eye for the doctors. The tradition of a huge party stuck and now it is even more than Elin's birthday, it is friends and relatives gathering to celebrate her really, and another year of good health. So how lucky do we feel to be celebrating her sixth birthday?  I can hardly believe it, Elin is six. A six-year old survivor.  Every birthday is a blessing and we will never forget it. We love you Elin (birthday party pics will, of course, follow) and we love you all too, for understanding :-) xxxx

Exhibit A. Bad hair. Gorgeous baby though ;-)

Little Miss Serious.

With big sis



Saturday, 12 July 2014

Shameless Plug

Ok so this doesn't really have an awful lot to do with Elin as such, it's just a shameless plug of her sister's talent :-) This is Caitlin singing solo during her school "Glee Choir" performance at the Llangollen International Eisteddfod on Thursday (yup, she's the awesome one with the microphone) I was there watching it live and they were amazing. They blew the competition out of the water and quite rightly won the whole thing!! Elin has watched this about five times already and grins like a maniac every time. I think I have said before there's nothing she likes better than listening to Caitlin. Maybe one day we'll be taking her to the West End to listen ;-) In the meantime, enjoy! xx

Friday, 11 July 2014

Throw back Friday

It's been a good week at Holly Cottage. Elin made a great recovery from her bug and has been fab. She even travelled to the distant lands of Mexico at school this week and enjoyed smashing a Piñata (with a little help!). She arrived home on the bus today (or the "Fun Bus"as we now call it)  with a massive grin on her face and her escorts said she had been brilliant. Apparently her favourite bus entertainment at the moment is listening to Tom Jones, which the escorts sing and play to her on repeat, to keep her happy :-) She is spoilt rotten even on public transport!! What a lucky girl!! Not only has Elin been great, but we have a new little addition to our family- the first boy in 19 years-and a little play pal for Elin, her newborn cousin little Eli Jac. We can't wait to meet him and when Elin gets to have snuggles I am sure there will be pictures-a-plenty for you to see blog fans ;-) .  Added to this great news there is only one week left until the School holidays, the sun is shining strongly and we are definitely feeling the Summer vibe! So for today's throw-back I have chosen a picture of Elin on the beach at Porth Madog on her first Summer holiday when she had just turned one. She is looking at her Nanny and Grampy (so cute!) As you can see from the second photo, which I have literally just taken, I think she is turning into something of a sun-worshipper. So happy Friday folks, have a lovely, relaxing sunny weekend! I know we intend to x



Sunday, 6 July 2014

Baby Oleg is feeling better

Well, after a good few days with an exploding bottom and a very lethargic demeanour, Elin has rallied, started smiling and stopped filling her nappies at a rate of knots, yay!! She is much brighter again and stopped lying around like a sad little bunny rabbit. She had a great time today watching "Andy's Dinosaur Adventure" on Cbeebies on the iPad, I had put it on thinking she would enjoy listening to it just behind her head but not only did she turn to watch it she visibly laughed and enjoyed it too! Double yay!! She is still a little stiff and dystonic but hopefully that will diminish as she feels better and better. Back to school tomorrow for you my girl!


Friday, 4 July 2014

Throw-back Friday

Just because.

I will always, forever and a day be your Mummy. 
You will alway, forever and a day be my baby- however long your legs get :-)

We still have the blanket. You still have the cheeks.

We love you so much, Elin

Happy Friday folks


Thursday, 3 July 2014


This is an article really worth reading for anyone interested in the education of disabled children in this country. This mother, who incidentally has her own website well worth a which includes a fantastic blog, was told that the places she approached with her daughter for Nursery provision were not willing to take her, due to her disabilities. Not only did some tell her that she was on a waiting list that did not exist, in order to avoid the issue of finding her daughter adequate support, but the L.E.A suggested that the mother should not expect Nursery care as it was her own 'lifestyle choice' to go back to work, thus needing care for her daughter!! I find this quite shocking in this day and age when all we hear about on the news is trying to get parents back to work after having kids. Perhaps just not if your child is disabled, then??


Elin hasn't had a good couple of days! She is suffering from a tummy bug again. It's almost identical to what she had just four weeks ago, so it's quite a surprise she caught one again so soon, unless she has something nasty lying dormant in her system! I think more investigations may be afoot. She is very lethargic and lets just say I think we are keeping Pampers in business :-( She just seems so fed up, it's awful seeing  her like this particularly since she has had a wonderful few weeks! Fingers crossed she gets better very soon. However, putting things in perspective, Elin's little friend Ellie is very poorly again and in ICU. Her parents were excited as June was the first full month she had spent without being hospitalised, but one day into July and she was being intubated again :-( Ellie's parents are amazingly strong but I just can't believe what they are having to deal with. Trying to maintain some sort of family normality for themselves and Ellie's older brother must seem like a pipe dream a lot of the time. Comparatively, we know how lucky we are with Elin who doesn't often need hospital treatment (argh I can't believe I just said that out loud) So once again blog fans please keep your fingers crossed for Ellie and if you've any spare wishes left say a little one for a speedy recovery for our  Elin-chops too, I miss her smile so much!

Poorly Elin having sleepy garden snuggles with Daddy. 

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