Living with Cerebral Palsy 🍋🍋

Wednesday, 13 September 2017

Mission Disney

It's difficult to articulate why taking Elin to Disneyland is so important to me. It started I suppose with an early Disney obsession. My twin sister and I would devour our Disney VHS's until they were worn out and even had a video of sing-a-long songs filmed at the holy grail of imaginative destinations, Disneyland. God how we begged to be taken there! As we made the transition from kids to teenagers, films like 'The Little Mermaid', 'Aladdin' and 'Beauty and the Beast' seemed to represent an escapism from the unsettling strangeness of impending adulthood and maybe that's why we think of them so fondly. My walls at fifteen years old were covered with Brad Pitt, Leonardo Di Caprio and Johnny Depp but also 101 Dalmations and Lion King posters. Before you dismiss me as a massive saddo I promise I was not alone! It was the golden age of Disney and maybe the golden age of a certain kind of pre-social media/mobile phone innocence lost forever now I guess in the world of early teenage years.
Luckily for us we got to visit Disneyland in the end for our 16th birthday (thanks Mum and Dad!!) in Florida and it really didn't disappoint. So Disney takes up a lot of my happy childhood memories and I think sub-consciously I always thought its something I could share with my kids one day. That's the thing about loving Disney films, it transcends generations, from the 1950's classics up to the present day. Even your Nan and Grandad know Disney films, it's just part of childhood nostalgia. 
So of course I had this dream of taking Elin one day, especially since I know they are geared up so well for disabled guests. This momentous moment happened in 2015 when we went to Disneyland Paris (Florida deffo not an option with Elin's hatred of travel and heat!) and we had a wonderful time. Elin's Daddy did not grow up with a huge love of Disney like I did (although he does love Buzz Lightyear haha) but it took all of half a day for any 'corporate money-grabbing' scepticism to disappear. Its the magic, it just sucks you in! So we had such a wonderful time that I said I didn't want to go back in case it wasn't as good and it spoiled my memories. Well that lasted just over two years then with the advent of an incredibly good health spell for Elin, we decided it might be time to go back. 
I was WAY calmer this time. In fairness Elin hadn't spent the week before we went in hospital so that did make things a little easier! 
The thing is, getting Elin anywhere with her dystonia can be a massive mission. Or not. Depending on the day and her mood. Getting Elin anywhere with her dystonia AND enough meds/nappies/tubes/feeding equipment etc etc can feel a bit like a "Mission:Impossible" to be honest. So as Elin's Daddy packs two T-shirts, one pair of shorts, some pants and some ginger biscuits (yes really. An absolute necessity apparently!) I am a slave to lists, baggage allowances, suitcase spaces and travel arrangements for weeks before. That's without the worry of accidentally breaking one of her epilepsy medication bottles en-route. Not an easy time to control my anxiety, but something I have to suck up and get on with if we want to go.
Reflecting on the way back this time (if you've been following my Instagram you will know we had the most incredible time but more importantly, Elin enjoyed every second which makes the mission completely worth it of course) I thought about just why it's such a big deal to me. I think it's because even just getting out there and back without any dramas feels like and incredible achievement. Seriously. I didn't forget anything vital, I managed to get everything into two cases plus hand luggage meaning Paul could wheel the cases and I could push Elin's chair (apart from hanging stuff on her chair you effectively only have one pair of hands to carry all the luggage which is why packing is so problematic), Elin was well the whole time we were there, there were no train delays (would have been a nightmare with Elins dystonia). It went as smoothly from start to finish as we ever could have hoped. So even all that means the holiday went well. To add into the mix that Elin actually visibly had the time of her life, so much so that we both welled up a fair few times each (ok, we both actually cried at least twice each), is the icing on the cake. It turns a great holiday into the best holiday ever. The only thing missing was Elin's beloved big sis, back at Uni for her second year, but once again we thanked the technology gods for face time and we didn't have to miss her too much!!
Elin wanted for nothing. She went on almost every ride that was available to children. Not to mention watching the street theatre, parades, musical shows (west-end standard but a lot shorter) and meeting characters (the actors are wonderful and talked to Elin beautifully, she was captivated). The French, it would seem are not quite so uptight about health and safety as they are here in the UK. If her chair wasn't able to go on a ride, they let us carry her on and sit with her. Joy!! This common sense attitude literally changed her experience into an amazing one. You've only got to look at her face of the 'Dumbo The Flying Elephant' ride to see what I mean. She was in heaven, therefore, so were we. 
For our part we were pretty exhausted coming home. The lifting gets to you after a day or two, in the absence of a bed/changing platform/bath at the correct height in the hotel room but also the lifting in and out of her chair for cuddles all day in the park if her dystonia played up a bit (thankfully it was for the most part entirely under control)Also,  there is still a kind of level of stress involved in taking Elin away, however swimmingly things go. This was evident in Paul's utter panic when Elin fell asleep during the parade (she rarely falls asleep in the day time). I was returning from the shop and could see the panic on his face- he said she was laughing one minute and the next minute he couldn't wake her. Between us we quickly worked out that yes, she had actually just fallen asleep! She was exhausted from all the fun and soon woke up again!! But Paul (who literally never usually panics) said his heart just dropped into his stomach because it suddenly hit home that we were in a foreign country and how vulnerable Elin actually is and in turn how vulnerable that made him feel in terms of if there had been an actual health emergency. The reality of our situation is never too far away.
So I love taking Elin to Disney because it feels like completing a massive mission successfully and achieving the once-impossible. It felt like a dream had come true when we walked through those gates and saw the iconic pink castle again . Just getting her there felt like a victory, we were on top of the world. I could take my daughter to the embodiment of my childhood imagination after all and not only could I take her but I could watch her having the time of her life just like everyone else. There was a time, when she was younger and pretty poorly that it felt impossible. But I guess it goes to show that dreams do come true after all, just like Disney would have us believe. In Disneyland Elin is truly equal to every other child because there's nothing they can do that she can't. Obviously her experience is different, but it's not less. 
Just like her. Different, but not less.
This was supposed to be our last visit, before she gets too big to lift. Somehow I don't think it will be.  The bubble of equality and happiness there is like a drug, once you've had it you want more! So until our next 'hit' Disneyland, au really were the best :-)
Thanks for everything.

When you wish upon a star
Makes no difference who you are
Anything your heart desires
Will come to you.

If your heart is in your dream
No request is too extreme
When you wish upon a star
as dreamers do.

Like a bolt out of the blue
Fate steps in and sees you through
When you wish upon a star
Your dreams come true.
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