Living with Cerebral Palsy 🍋🍋

Wednesday, 29 July 2015

Llareggub

We are just back from one of the most beautiful places I have visited in a long time. The Quay Hotel, Deganwy, truly is stunning with it's views across the Estuary on one side and out onto the resplendent Conwy Castle on the other.  It was like being on holiday in the village from 'Under Milkwood'. As I looked out of our patio doors onto the balcony I am standing on in this picture, I could almost hear the dulcet tones of Richard Burton reading Dylan Thomas's lines in his hypnotic welsh lilt. We had a 'suite' (Yes I know!! Not a sofa, actual hotel suite like Richard Gere has in Pretty Woman and everything!!) because there were no family rooms left when I booked so we threw caution to the wind and thought why not???
I'll tell you why not, blog reader!! Cerebral Palsy, that's why not!! We spent a wonderful 24 hours there before having to come home as Elin was suddenly, and quite inexplicably struck with a tummy bug. She gets these random tummy issues from time to time, but hasn't had one for ages. Basically she starts retching (never any vomit since she was four months old thanks to her fundoplication) and can't stomach any feed. The retching is quite aggressive and can be fairly regular. It's absolutely awful for her. She had a tiny bit of retching the day before but nothing came of it. Then, when she slept soundly all night in the hotel we initially felt very lucky (huray! A nights sleep AND a holiday!) but then very suspicious. Usually within two minutes of waking up, she smiles. There were no smiles this morning no matter what we did and this was a huge alarm bell. Soon after, the retching started. It was clear pretty quickly that she just wasn't well, she was sleepy too despite the massive nap! It didn't take us long to decide instead of going to Llandudno for the day, before spending another night in the hotel room bigger than our house, we would have to get her home.
Disappointment, coupled with worry and sympathy (for Elin) does not a happy Mummy Drake make. As Paul started packing I went to Reception to tell them we were going to have to check out a day early. I was REALLY brave (read: not. brave. at. all) My chin started wobbling and I'll be honest with you I stood there in Reception and cried at the poor woman behind the desk. Julia Roberts would NEVER have done that! What a loser. I never cry in public!!! (read: I cry all the time in public, but never before in a hotel). As I handed over my card, paying full price for the whole stay was a final, if fairly insignificant in the scheme of things, blow. I couldn't really think too much about it though cos the Receptionist was distracting me by repeating 'Oh! Don't cry!' at me and I was worried about dripping snot onto the card machine.
Anyway the point about this post is coming, I promise. Whilst we finished packing there was a knock at the door. it was the Receptionist. As I waited for her to say 'you owe us a new card machine, you gave it water damage' she smiled and said she had a word with her manager and he would like to offer us a complimentary stay for the future in lieu of the night we had to pay for but couldn't use. I said 'Omhgghg, wershhhhooo veryryryr grateful thankssshooooo shooooo much' to her (because I was crying again) and she smiled and left.
So the moral of this little story is simply, there are still nice people in the world. Even hoteliers who are under no obligation, moral or otherwise, to turn an upsetting situation into a slightly-less upsetting one. Yay.
Poor Elin is much the same at the moment (I'll keep you updated). We've been here before- usually we simply have to wait for it to pass. Experience tells us there's little Children's Ward can do though we will take her if it continues just to get her checked. The worst thing ever in my world is going a day without a smile and today we haven't had a smile, also watching her struggle with retching is definitely in my top five of least favourite things I have to watch Elin go through. But thanks go to the kind, faceless Hotelier who provided a small ray of sunshine in a bit of a cloudy day. A Richard Gere character in a film, a rarity, a gentleman. Thank you.


A Room With A View, hwyl fawr until next time.

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Friday, 24 July 2015

Wow

Check out Elin's fantastic talking and looking at her new 'Talking Tom' toy! Only sixteen seconds due to my stupid phone memory being too full! I will try and upload a longer one at some point. Elin is REALLY improving in the communication area and we are so proud of her!
video
Oh and whilst I'm here- Elin enjoyed a visit to Park Hall yesterday as a little birthday treat! The fluffy baby bunny was her favourite!


New dark/sensory tunnel! Exciting!


Tractor ride!


Go Karting with Daddy! Oh dear! 

xxx

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Wednesday, 22 July 2015

Happy Birthday, Baby.

There can be miracles when you believe
Though hope is frail, it's hard to kill
Who knows what miracles you can achieve
When you believe, somehow you will.....
You will- when you believe.....
( Cant take credit for that. Copywrite Mariah Carey ha )

Our own miracle. When she was born..and this morning. Amazing. (Monkey still her best buddy!)

Elin's had the best birthday ever. We've just sat down. Visitors started at 11:00 and didn't stop coming until 6:00. This girl is LOVED!! I'm too tired and slumped in a sugar coma to type too much so I'll share two photo montages my phone just cleverly produced. They tell the full story just about! She's been soooo lucky and had too many wonderful gifts to mention. With the money she received- well, frankly she could probably open a Swiss bank account, but instead we're going to get her a switch-operated MP3 player. Can't wait to see her using it. She's also having a 'piano' mat (so I can re-enact 'Big' and pretend to be Tom Hanks in FAO Schwartz) and a soft voice-activated 'Talking Tom' toy which is inspired by the iPad game (which she loves) and we can record our own messages on it for her :-). I'll stop talking now and give you what you really want- the photographs. We think this was the best Elin has ever been on her birthday, ever. We are absolutely made up. Take care folks, until next time....


xxxxxxx



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Tuesday, 21 July 2015

Holiday snaps- Updated!!

Having a lovely holiday so far- doing some SUPER standing and getting some fresh air! There is already a big pile of presents growing in the corner of Elin's room ready for tomorrow and we have THE CAKE  thanks to my uber talented friend Annabel (maker of Elin's cake for the past seven years) but no sneaky peak until tomorrow I'm afraid :-) We have also booked a holiday for next week yipeeee! We're taking Elin to Deganwy, where I haven't been since I was little so keep your fingers crossed and make Elin a birthday wish for some sunshine next week please folks :-)

Morning stroll

Elin having a 'good standing' day. What a beautiful face! 

VERY cleverly playing with her voice-activated light toy!!! :-) :-) :-) 

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Friday, 17 July 2015

End of term

After-school cuddles. Happy Summer Holidays everyone! (Oh, yeah. Paul still has the beard. It might not be staying. If he combs it in front of me one more time, it definitely won't be) 
Elin is happy it's holiday time but will sorely miss her buddies and amazing teachers and helpers at school! Six weeks is such a long time for her! Have a great time everyone!
xxx

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Thursday, 16 July 2015

Seven.

How do I explain why we're not having our usual big birthday bash for Elin this year? I don't know if I can. Not without sounding like a selfish, self pitying idiot anyway. But blogging about Elin always has to be about honesty and so I will try to explain to you, kind person reading my blog, in the hope that you will come to understand that I'm not a selfish, self pitying idiot (not very often anyway!) just a Mummy who still, occasionally, but very definitely, struggles to come to terms with what happened to Elin seven years ago.
Regular blog readers will know, Elin's birthday is an occasion of mixed emotion for me if ever there was one. A complete double edged sword of joy and heartache. So in a nutshell by not having the party this year I'm hoping to avoid a dollop of anxiety that usually accompanies the day. On the face of it, we're tired. Elin's birthday is always the first weekend of the Summer hols. Anyone working in a school will know how manic the last week of term always is and trying to plan a party/BBQ for forty plus people during this week can be quite stressful. Not to mention the constant worrying about the weather, what with our house being the size of a postage stamp, rain would literally stop play. We've not been too unlucky in the past, but a downpour literally would grind things to a halt. Last year it basically did and poor visiting family had to attempt to towel dry the Frozen bouncy castle- deffo not ideal. Neither was Paul cracking two of his ribs on said bouncy castle whilst messing about with other equally irresponsible adults (Ha! You know who you are!!) and spending the evening in A&E.  To cap it all Elin hasn't been 'right' for the past two years (does the huge influx of visitors confuse her too much we wonder?) thus making the point of a party for her debatable. So the decision not to hold one this year was, initially, a fairly easy one and one on which we both agreed. That was the decision our heads made. Our hearts made the same decision, but for different reasons:
*Deep Breath*
The day Elin was born was both the best and worst day of my life. This is a juxtaposition that rarely a Mummy will find themselves in. I know I need not go over it again- it's all there in the previous six years of blog archives and I credit you with the empathy to understand. Seven years ago next Wednesday, my life ended and my baby died. But a new, different daughter gasped to life on a ventilator in an ICU unit a stones throw from us, her heartbroken parents and so she was re-born and so was life as we knew it. A miracle. A reprise, from God knows where. Another chance and the best moment of my life. But as reality slowly dawned for what this meant for my perfectly beautiful girl, also, of course, the worst moments of my life ensued. Because I wasn't ready to lose the child (and the life) I thought I was having and I wasn't ready to process the idea of the child the doctors knew Elin would become (after all what Mummy would be when all you can really focus on is whether your child will continue to take each breath).
So Elin's birthday takes me back to those moments each year, the joy, the pain, the ecstasy, the disbelief.....I have no words to adequately describe it in truth. It seems dramatic to say our lives were altered unequivocally in those short minutes surrounding her birth but it's difficult to quantify it any other way. Her birthday each year is an amazing triumph, a moment we feared we may never see, a true celebration . But it also acts as a stark reminder of what could have been. Not only that but it brings back memories, still so vivid, of the sheer horror of what happened when she silently slid into the world the colour of marble and we knew in our hearts in an instant nothing would ever quite be the same again- before we could possibly have truly known. Someone suffering from PTSD once told me it's like being in a car crash and re-visiting the scene each year and re-living it bit by bit. Yes. It is.  no fond memories of happy phone calls and gifts and balloons and home-coming for us. Just pain, distilled and agonising. This is quite something to bear each year and it never really gets easier. When Elin was little, the parties were appropriate- everyone has parties' for tots and we all accept the celebration is mainly for the adults as invariably the child has no idea what a birthday is- but will enjoy looking at the photo's in the future and will gradually, maybe two or three years down the line start understanding what a party is. For me, I watch how Elin year in, year out will never get past the baby stage. She doesn't know it's her birthday (and Im not suggesting that she doesn't know something special is happening, but I have to be honest with myself here) . She will never look back at the photo's fondly in the future (though we will). Her lovely little friends are growing up. They jump on the bouncy castle, they chat and make people laugh and splash in the paddling pool. They eat the cake. They play with the toys in the party bags I made. All whilst Elin gazes mutely on and sits on laps getting stressed and dystonic and can't do any of it. At her own birthday party. Even though she is no longer a 'tot' and hasn't been for many a year. And I watch it all, so grateful for the love people have for her and the fact that they have come, in some cases from all over the country, my heart swelling with pride and happiness whilst simultaneously shattering into a million broken pieces with an ache that literally stops me in my tracks.
And I feel, of course like the worst Mum ever (nobody does guilt like me). I feel like I'm letting Elin down somehow and that I'm not showing my gratitude to the people I care most about in the world for their support. Elin's birthday has been a wonderful reminder in the past at just how much she is cherished by all our family and friends and how everyone realises the magnitude of her reaching another birthday happy and well. But I  just didn't know if I could do it again this year. So we're not. Desperately hoping that nobody is offended, that everybody understands. We're not, of course, ignoring the birthday- are you mad? We're choosing instead to have a small tea party on Wednesday (the day of her actual birthday) for family and there WILL be an amazing cake as usual of course. This seems like a good compromise. But Elin's birthday doesn't feel like a time we should be putting undue pressure on ourselves and if life with Elin has taught me anything at all, it's go with your gut. This year, my gut says no birthday bonanza. Next year could be totally different- absence makes the heart grow fonder after all! My gut and I will keep you informed.
Thank you for understanding.
xxxxxx

Birthday party's past......






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Saturday, 4 July 2015

Carnival Time

A glorious day today bringing quite a big surprise in that Elin suddenly decided she liked her chair again following a few days of not tolerating it. But ours is not to question why, ours is to just to accept serenely and adjust accordingly (can anyone tell I've been on a SAP course with work this week?) Well she picked a good day for a change of mood since we were taking her to Hope Carnival to meet Elsa and Anna of 'Frozen' fame! I'll let you into a secret, it's not the REAL Elsa (shhhhh!) Elsa is, in fact, Laura and Anna is her real-life sister, Rachel. Laura, in a funny twist of fate was  a past member of staff at Elins school and Elin's first ever support worker when she started there over four years ago. Elin loved her! Chances are if you have a child under the age of about 12 and live in the Wrexham area you have probably already met Laura and Rachel. They are incredibly hard-working and are not only booked out doing children's parties every weekend but have also recently visited 50 primary schools in the area, doing a Frozen sing-a-long in character, completely free of charge to the schools, in order to raise money for Hope House. Pretty amazing- who gives up their time for free these days???? I should point out that their fab Mum (also a past member of staff at Elin's school) regularly joins the 'Frozen' team in a giant 'Olaf' costume - they can even sign using makaton for children with additional needs. What a crazy-talented family! Hope House is a facility I have blogged about before which is local to us and provides support to children like Elin with life-limiting conditions. It's an amazing place and families like ours are incredibly lucky to have it at their disposal, since I know other countries such as the USA don't offer any respite care for parents of disabled children. Although we don't use Hope House for Elin at the moment I know so many people who rely on it's support and we have been able to use the hydro pool facility in the past and get a glimpse of the wonderful staff there. A truly life-changing facility, which is also of course a charity relying on donations.
Anyway disappointingly and frustratingly having missed Elsa and Anna when they visited my school as part of the 'Let It Go' challenge for Hope House  (I was on the SAP course learning how to deal with disappointments and frustrations!!) I was determined I was going to get to the Carnival today to see them, although Elin had been incredibly lucky and seen them at her school already last week (see blog post 'Let It Go') I wasn't disappointed.  They were fab, they had the crowd of children in the palm of their hand and most importantly Elin loved it, smiling at the songs and demonstrating some AMAZING listening. She even saw her buddy Harry from school yay!
What was also nice was the sense of community the carnival fostered. It felt like being part of a long Welsh tradition that goes back hundreds of years and not one I have been part of in Wrexham before. I guess the village carnival is a dying part of our heritage and it's really sad! The parade through the street of various floats/marching bands etc, the carnival queen's and the involvement of the local school children plus the neighbourhoods of three villages coming together made for a really lovely event which, not to overstate anything (moi??) felt like it was getting back to the roots of family values. Living in a village myself it struck me maybe if we had more village carnivals, we would have less village problems?
I'll leave you with some pics of the day (OF COURSE) and hope you're day was just as magical and ..well...happy.
Have a good weekend folks.




Mum get me away from this Dragon!!





If anyone would like to donate to Hope House you can do so via Laura and Rachel's 'Just Giving' page:
https://www.justgiving.com/theletitgochallenge
xxx
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