Living with Cerebral Palsy 🍋🍋

Saturday, 2 August 2014

Throw back Friday

Arghhhh! I forgot throw back Friday! This is because I am a teacher and as all teachers will tell you during the long stretch of Summer holidays there really isn't any need to know what day it is and thus quite often I actually don't.
But before I get too smug and annoying about it, for the benefit of all those of you working on a more 'normal' timeframe perhaps I'd better just show you some photo's.
This week Elin had some new splints FINALLY. Our amazing Orthotist was back from a double whammy of maternity leave and wow, were we pleased about it. Elin finally has a pair of splints that her legs slide into and are a perfect mould/fit. it's early days in terms of how she tolerates them and if they pinch/mark her but so far we are thrilled. Not least because in the making is a pair of custom-boots which the Orthotics company are creating to work in tandem with the splints. They should be the comfiest thing ever for Elin. (I will admit, the prototype we got shown today looked slightly like a built-up shoe for a polio victim circa 1930. Or an old fashioned iron diving boot. Basically, with two on, Elin looked like a golf club at best and a creature from another dimension at worst. Her feet were bigger than her head. Lucky that the lovely Orthotist **Warning massive sexism approaching** is a women, then. She completely agreed- I figured she understands the 'Carrie Bradshaw' affect on us ladies that lived out our University years in the late 90's and are still, fourteen years down the line, bemoaning the fact that we can't afford even one pair of Jimmy Choo's or Manolo Blahnik's. She is going to talk to the company before they are finished, to do all they can to improve them aesthetically)  Hopefully the boots will be slightly less diving and slightly more designer then by the time they are done! Hooray!
In the meantime, we had the boots I chose when Elin had her legs cast for the splints. They are soooo gorgeous!! Ok so there is a bit of forceful thumping (think Tomato Ketchup bottle style) to get them on, as they aren't entirely custom made to fit the splints, but the Orthotist was happy that they only places they are tight are around the splints and so shouldn't have a negative impact on Elin.  So we brought them home, yay!! They are pretty punk with a hint of D.M's. (My Nan will definitely refer to them as 'Bovver Boots') It got me thinking about Elin's first pair of Orthotic boots which I was terrified to pick up, but actually loved once I saw them. Not 'NHS regulation' style at at all! Then I started thinking about MY first pair of shoes, and how my Mum had kept them lovingly in perfect condition since 1982 and how I hoped I could pass them onto my daughter for this reason. But Elins feet were too bent to fit in them by the time they should have fit perfectly. This is a bit gutting to be honest, but I'm not sad for long when I see Elin's new beautiful shiny boots and remember how cute her first pair looked too on her little feet :-) I will simply put the patent leather burgundy clarks back in their time capsule and hope one day another little girl joins the family who can get some use from them, 'Vintage' is making a huge come-back after all.
Happy Weekend folks! We are off on our jollies to 'Ribby Hall' holiday village for a week where we haven't been before and looks lots of fun on their website! So fear not if you don't see any updates for a while, we will hopefully be enjoying ourselves in the sun (pleeeeease god) and hope you will be too xxxxx
My first shoes. Now 'Vintage' :-) 1982

Elin's first boots.


Her latest, awesome, red shiny pair! Yaaayyyyy!!!

xxxxx
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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!


xxxxxxx
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Homecoming

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Wednesday, 23 July 2014

Leaving on a Jet Plane (part two)

See previous post for part one :-)
 http://cerebralpalsyjourney.blogspot.co.uk/2014/05/leaving-on-jet-plane.html

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!!
Eeeeeeeeeeeeekkkkk!!!!!
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!!!
xxxxxxxxxxxx
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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
xxxxx


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 :-)



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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)
3. TALK TO THEM
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
xxx
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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 :-)
xxx
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!!!"
xxxxx

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