Living with Cerebral Palsy 🍋🍋

Wednesday, 29 July 2015


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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