A Princess Meets A Princess: When Disney Met Lily

Before starting this chapter a huge thank you has to be said to those that have shown their support. Particular thanks to a close friend, Janine Leal, who stands beside us without hesitation. We have many things to thank her for but for this next tale we thank you for setting up the GoFundMe that allowed this trip to happen - "Magical Memories":

https://www.gofundme.com/f/magical-memories-for-lily - Thank You x

At the time of this trip Lily had sadly lost the ability to eat anything solid, coordination all but gone, vocabulary and speech diminishing yet a smile could be drawn if you put the effort in. As we edge(d) ever closer to the Feeding Tube something special was needed. With the GoFundMe target having been reached it was time to make a memory and where better to go with the kids? Our first Magical Memory funded trip would be Disneyland!

Whilst these posts predominantly surround Lily we must remember our little but fast growing son, Arthur. This trip was arguably as much for him, if not more, than it was for Lily. Arthur found himself having sleepovers at Auntie Tiggers, days out with friends, school pick-ups from multiple people and an excessive number of visits to Grandma and Grandads. I am sure he was loving the variety but  Em and I obviously want to keep him close and be sure that he wasn’t feeling like the outcast. Once he knew Disneyland was on the horizon not a day went by without him asking "is Disneyland today?" despite having never watched a single Disney movie or even an episode. On the 4th January the time came for Myself, Emily, Arthur, Lilian, Auntie Tigger, Uncle Cal, Grandma and Grandad to step onto French soil with roughly 48 hours to explore this mesmeric wonderland. None of us need the history of Disney or a ride by ride guide so instead here are a couple of  our favourites.

We have asked Arthur what his favourite part of the trip was but there was clearly too much to remember or maybe a blur in the excitement so we received the generic “Ummmmm, I loved everything”. Me on the other hand, I can choose a best bit based on comedy value. On the morning of our final day we had a table booked at the Character Breakfast. Anybody that knows Arthur will agree that he is outgoing, caring, loving, intelligent and incredibly confident. You will also know that he will not keep quiet regardless of the situation he finds himself in; but the day finally came. As a number of characters waltzed their way through the dining area Arthur stood in amazement, silent on the spot making us question if he was okay. He appeared starstruck! As we settled into our seats ready to delve into our under-cooked bacon and liquid textured scrambled egg we thought it best to fill our pockets with pastries for the day ahead - Cheapskates. With his Disney Signature Book signed and a parting kiss from Daisy Duck his silence was opportunistically broken. The characters scurried out of sight and he addresses the table with “Hey, do you know what?”. All eyes turn to Arthur to see what gem of a comment he was about to make. “I think they're just dressed up people". All those aged between 30 to 65 leapt to convince him that they were real, nothing staged, and this could be proved by something special; by meeting a real life princess. “But I don’t want to meet a princess, I will go on Dumbo with Grandad”. Cool, see you later and away they flew.

Once the chaos of the characters came to a close we headed for the door. Emily and Uncle Cal took this window of opportunity to divert to Space Mountain whilst the clueless among us tried to figure out where this secret princess hideout was. After what had been our longest queue so far we were allocated a line. Who will we meet? Will it be worth it? Herded to one side as others left their wonderland we cautiously approached our entrance. We peak around the corner to find Cinderella. Dressed to the nines she finally got to meet a real Princess, Cinderella got to meet Princess Lily. As the photographer stood there capturing the moment Em burst into tears. Now as I am sure you will agree, Em and I have a wholly justified reasons to cry yet we couldn’t help but wonder what Cinderella was thinking. “Is this 30 year old woman really crying over meeting me?”, we will never know.

It is very difficult to say whether Lilian enjoyed her trip to Disney as the disease has caused more than just physical regression. Em and I are learning each day that something may need to change, that there could be another way or there will be unexpected issues still to come. Days before the trip Lily had started refusing liquidised food and juice so her energy levels were drained. Smiles were few and far between and a single yogurt could take an hour to feed her. Finding reality in a fairytale land that things are unlikely to ever improve but there are steps to take. On our return to England her feeding tube was due to be fitted in the hopes that this would be uplifting. With a now diagnosed condition of leukodystrophy we have accepted that we have become a part of a minuet community in the country, arguably the world. As a family we are facing challenges of a Cruel World; finding joy in a Small World, after all.