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Middle Farm and “Finding Dory” 24 August, 2016

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No summer holiday would be complete without Mia having a day out with Aunty Vicky and Uncle Steve. Here is their update!

Mia took Auntie Vicky and Uncle Steve out for the day the other Saturday. First of all, they all went off to Middle Farm. Mia loved seeing all the animals, and found it particularly funny when a big group of chickens (the ones that look like they are wearing fluffy trousers) kept following us. Mia particularly enjoyed stroking the very soft ear of a lovely goat who came over to see her, and stroking Mitzee and Rita the sheep, but Mia’s favourite animal of the day was “Shoogar” who was a very very big horse.

We all had lunch at Middle Farm. Mia had a jacket potato with coronation chicken and finished every last mouthful and helped Auntie Vicky with some of her cream tea. After lunch it was time to have a quick look in the gift shop – Mia chose a paintyour own Owl money bank, some princess hair slides, and a book.

We then headed off from Middle Farm to Auntie Vicky and Uncle Steve’s house for a little bit and to get ready to go out to the cinema. Mia read her new book – which was a lovely story, and afterwards wrestled Uncle Steve and pinned him to the sofa and wouldn’t let him up again – so Auntie Vicky had to come and rescue him.

With Uncle Steve unpinned from the wrestling might of Mia, we headed off to thecinema at Sovereign Harbour. Having purchased our hot-dogs, we got settled into our seats ready for Finding Dory. Mia absolutely loved the film – she giggled; every time Dory spoke “Whale” Mia also spoke “Whale”, and during the exciting climax of the film kept patting Auntie Vicky excitedly on the arm, and kept looking from the screen to Auntie Vicky and Uncle Steve and then back to the screen – just to make sure they were watching properly.

Following the film, it was time for a very tired but very happy Mia to head back home to Mummy and Daddy.

Thank you Mia for simply the best day, as always. Lots of love Auntie Vicky and Uncle Steve xxxx

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Mia’s Chariot 19 August, 2016

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We met Simon and Obama (the pony) from Pony Axes again yesterday in Stanmer Park. I think Mia now thinks of it as her chariot. She gets the chance to look around Countryside we couldn’t possibly hope to push a wheelchair through. It’s absolutely brilliant that this chariot exists and it’s for everyone, it has seats too, and is accessible by wheelchairs. Mia had the opportunity of going up a track which we would have taken one look at and thought “nahhh!”, and she gets to experience the lumps and bumps in the road too, bouncing over rocks, with sure footed Obama being led by Simon, and us walking along side. It’s a whole transport system, and we love it. And Mia – adores feeling all the different sensations that she can on the way. Just look at her little face in these pics!

Mia the Superstar 19 August, 2016

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And drum roll please… here is Mia, in her first little film..! It’s something our lovely friends at Scope have come up with for their legacies campaign. Scope are amazing, and we really hope our little video helps! Click on the link and watch the video!

Half Way Through Summer 14 August, 2016

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We’re half way through the long summer holidays and this year we’re having a stay-cation, so we’re grateful for the sun at last, and grateful that it’s not too hot (yet)! Mia has been doing all sorts of creative things at Class of Their Own Holiday Club, doing amazing artwork with a few different people she’s had with her for the day, including Tilly, Rosie, Almu and Penny; and lots of friends that come to play with her there. She usually comes home from these days happy, chatty, and very tired. She’s also had some days out with Nickie and some days with Aunty Vicky and Mummy where we have been ladies what lunch…

Mummy and Daddy and Mia went for a day out to Brooklands Park in Worthing. We’d read that there was disabled access on various things. We tried to make the best of it. The first thing we encountered was a man with a petition asking the Council to clean the lake. He was right – it had dead birds in it and the water looked disgusting. There are no boats that you can go out on, there is nothing. A beautiful waste. Unused boats rotting upside down in the lake. Of course we signed the petition, we totally agree that the lake needs to be looked after – for wildlife and in case of people – children included – falling in there. If any child had fallen in I would have recommended going for a typhoid jab. It was beautiful sunshine though, and I got some lovely shots of the lake anyway – it’s important to try and find beauty wherever you can.

There was an interesting older woman with a trolley who brought tons of grains or seeds for the swans in the lake. She had a special call for them. She seemed more interested in talking with them than people – I like that, reminds me of my uncle Staffan, I miss him. She and the swans were fascinating to watch: all 3 of us were captivated.

Now is the time to mention something very exciting. Mia has “AFOs”. What’s that? What’s it stand for? Assisted Footwear something. Basically, like very stiff long open boots, that go inside shoes. Mia has been wearing her Piedro built up boots for so long, we were suddenly faced with the option of going shoe shopping – for sandals! So Mia went out sporting her lovely AFOs (with one built up heel) and her new purple and white sandals that she chose. She chose the same pattern on her AFOs as on her back brace, so she’s matching – and proof that the eye pointing choices she makes are not random but that she has very definite opinions sometimes of what she wears!

So at Brooklands we walked around and looked and looked for things that would be useful or accessible. Mia proudly wiggled her legs about in her AFOs with her new purple and white sandals on her feet. The paddling pool was cram packed with children and no way could Mia fit in there in her chair so we walked on. We found the park with two wheelchair swings – yay! Completely bolted up! One was chained to the ground so couldn’t be used by anybody and the other one had the floor bolt undone so it could be swung with children climbing on it, but the ramp to get onto it was bolted so Mia couldn’t wheel on there. So I stayed with Mia while Andy went to look for someone – anyone, to advise on a key. A little boy clambering on the swing asked me what the swing was for, and why I was waiting. I replied that it’s a special swing for people like Mia to go on so she can stay in her chair. He responded “so it’s for wheelchairs?” well, that will teach me for patronising a 4 year old. Andy eventually came back between 10 and 15 minutes later with key, which he had to leave a deposit for(?!?!?!?!?) but as he had no money with him (everything was with us two) he had to leave his drivers licence in their till. I don’t really want to use expletives in Mia’s blog so I’m just walking away from that one.

When Mia eventually got onto the swing, she had a lovely time. She asked for more even though it was squeaking so much it felt like it was drilling into my head. We then went on the roundabout briefly (it was floor level accessible which was great). We couldn’t see anything else in there that Mia could use – the link (see previous paras) explains all sorts of things that are supposed to be in there, but we didn’t find them.

But here’s the thing. Imagine your child, going into a playground. Imagine that all the other children are playing on everything, and there are only a couple of things your child can play with, and one of them is completely bolted up. You have to search and search to find some way of unlocking it, and while you do that, various people notice your child just there, not playing. Imagine how isolating that could feel. Remember how much as a child it’s important to fit in and be part of everything with others. Now imagine how pointedly different that experience could make your child feel. It hurts sometimes, on Mia’s behalf. I smile, I’m good natured, I try to rise above people possibly not thinking things through fully to help others. But it still hurts.

We were going to ride on the little train. It did not have wheelchair access. We looked at the soft play area. Didn’t look like Mia could do anything much in there either. There was nothing else, so we walked to the cafe to return the key (£$*&$£*) and get Andy’s licence back (!”$%^&*) when we noticed a nice smell of chips, so we thought – let’s redeem this day but sharing a large cod and chips between us… it arrived on a child’s size plate and when I DARED to question it (seriously – I just asked a question and was met with a look that would wither lettuce) “is this a large? have I got the right one?” STONY SILENCE and STAAAARE “I’m sorry I’m just asking..” “YES IT’S LARGE” (OK then, never mind, we just won’t come back, this is crazy rubbish, the 15 or so chips were nice but not the cod and definitely not the mushy peas which were CRUSTY). Will I never learn that sometimes you just have to walk away, rather than keep giving things / people / circumstances chances? Still, we smiled in the sunshine. It’s sunny, so many people have such a lot less.

Today however, today we met a wonderful and inspiring man: Simon with a fabulous pony called Obama, and some other children and parents and carers in Stanmer Park. Simon Mulholland has designed a – searching for the right word – carriage? buggy? adapted thingy?! – so wheelchairs can go onto it and the pony pulls them around. It’s for transport basically, but we were having rides on it in Stanmer and giving it our seal of approval! The world needs more people with that kind of drive and enthusiasm to improve people’s lives. Their site is PonyAxes, check them out, and enjoy the photos!

Fairy Princess, the next big band and more! 8 July, 2016

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This is a special blog written by Uncle Steve and Aunty Vicky – thank you, as always:

Auntie Vicky and Uncle Steve got to spend a whole afternoon with Mia while Mummy and Daddy went to do archery in Battle.

Mia had bought her little keyboard with her, and also her big roll-out on the floor keyboard, so music was very much the theme of the day. First we had Mia in her solo artist guise as the internationally acclaimed “Meep” – featuring many styles, but particularly disco with some very funky rhythms.

The internationally acclaimed Meep making beautiful music

Mia then decided that being a solo artist was good fun, but forming a band on the side would also be good fun. First up we had Puddie and the Bear (Mia and Uncle Steve) specialising in pop songs with an underlying Tango style bass line.

Mia then wanted to set up a second band, so right there and then Aunty and the Cutie Pie (Mia and Auntie Vicky (funnily enough!)) was formed – this was an alternative indie rock group.

After a little while, Puddie and the Bear, and, Aunty and the Cutie Pie, collaborated and formed a super group MUSAV (liking the acronym using our initials!) – bringing all their individual styles together to make an amazing new sound.

All this making music was hard work. So Mia and Auntie Vicky had some girlie pamper / make over time. Auntie Vicky and Mia played with and styled each other’s hair (Uncle Steve obviously doesn’t have enough hair to do anything with). Uncle Steve had bought Mia a magazine about Fairy Princesses – which came with a gift of a Fairy Princess wand, tiara and wings. So after hair styling Mia put on her tiara and wings, and played with her wand, casting lots of beautiful Fairy spells. As you can see from the photo, Mia was the most beautiful and sparkly Fairy Princess.


In Mia’s Fairy Princess magazine there was a Best Friend quiz, which asked questions about what you preferred out of two things – like beach or forest, and then you counted up how many you and your friend had in common. Mia and Uncle Steve did the quiz (with Auntie Vicky asking them the questions) and they had 7 out of 10 things that they liked best in common.

And if all that wasn’t enough there was also lots of singing – Mia’s favourite song to sing was “A Pizza Hut” – lots of giggling at that one, particularly as rather than McDonalds we always sing McMia; and we also did some story reading – Mia chose “Guess How Much I Love You” and “Hic” as the books of the day, which Uncle Steve read with her. Mia really loves the hiccoughing sounds in “Hic” – Auntie Vicky does the best hiccoughing noises, but Uncle Steve tried very hard, and obviously did okay as the was lots of giggling.


Just after we had finished reading Hic, Mummy and Daddy got back from their fab afternoon out, so we all had dinner together, the perfect end to a perfect afternoon.

Thank you Mia for simply the best afternoon, as always. Lots of love Auntie Vicky and Uncle Steve xxxx

Mia and Bazil 9 June, 2016

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This is Mia and Bazil. She has been doing regular horse riding via Downs View School most weeks. I think today was her last session. She loves Bazil ❤️

Thrill Seeker Mia 17 May, 2016

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Mia had a couple of days holiday at Fairthorne Manor with School – 3 days, 2 nights. Zip wires, climbing wall, slides… she loved it. Here are a couple of photos – thank you so much Downs View School, you’re amazing!

Last Day In The Sunshine State 10 April, 2016

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20.03 Saturday 9th April

Well, we’re on the plane. We’ve had the absolute best holiday. Today we went to check in at the Airport and then went to Universal Studios again, having lunch in Bubba Gump. Their coconut shrimp is really really awesome. Plus we were quizzed on our Forest Gump trivia by our waiter – so much fun!


Mia’s dinner arrived in a boat!


We then had a bit of a walkabout in Universal Studios. We still had the cases in the car and I didn’t want to wait to long to get to the airport but it was long enough to soak in the last sun, the atmosphere, and meet a few new characters… Betty Boop, Beetlejuice, the Blues Brothers, the entire Scooby Gang and the Mystery Machine, and Homer, Bart and Lisa. 

we caught the parade – Mia loves the parades abd they always notice her and wave and blow kisses


the Scooby Gang


Sus auditioning for a part in the Scooby Gang


Bart was banging his head as they’d all just had a family “fight”


Great way to finish off the most beautiful holiday.

A few observations about the people we’ve met and the Florida Americans: their can do attitude has so impressed us, Mia has never been a bother or a nuisance or anything other than “hello there princess!” Everything has been “no problem!” It’s been so brilliant that she’s been treated as a normal child by everyone and nobody has sighed or huffed or thought things were a bother. Customer service in this Country (or state at least – that’s all I have to go on) has been the best I’ve ever experienced.

We would have been happy to stay but we’d miss the people we love.
We are so incredibly grateful to everyone who made this happen. So much love and gratitude to you all xxx


Mia Making History 9 April, 2016

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Today we went to the Kennedy Space Centre, there was a real live actual rocket launch taking supplies to the Space Station. Because there was a real live actual rocket launch, it seems tons of others had the same idea. I’m not sure the Centre knew what hit them, they didn’t seem used to dealing with such crowds, it was a bit crazy, standing in line queuing for food for 20 minutes and the line didn’t move and nobody walked away with food. So I tried another of their cafes and the same thing happened there. We’d packed a sandwich for Mia and we had satsumas so we made do – however, it was stupidly hot (I could actually feel the sun burning) and hardly any shade anywhere and Mia got quite distressed about this so we spent a lot of time in the shop, making use of their air conditioning and wheeling Mia round and round singing her songs. 

Seeing history made here today, and being a small part of witnessing that – was awesome. 

We also saw the real Atlantis Space Shuttle which was wow. We all got to sit in a cockpit. Woo hoo!


time to launch


well i didn’t know this so i thought it was interesting


excited pre launch


just after launch!


thought the trail was interesting


Space Shuttle Atlantis


About to combust with excitement


full Atlantis Space Shuttle


inside one bit of the cockpit


the Hubble Telescope replica




dancing in the car park of the restaurant


Root beer happiness


strawberry margarita happiness

With love and gratitude xx 

Universal Mia 8 April, 2016

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00.12 Friday 8th April (but Thursday 7th from my point of view)

Just when I though this holiday had peaked, it couldn’t possibly get any better, we went to Moe’s Tavern in Springfield and I had a Duff beer with Barney at the bar.

Universal Studios. We went on a Shrek 4D adventure which Mia loved, then a Despicable Me ride – which was a 3D experience sitting in the seat which moved about and because of the screen surrounding you it was like you were doing everything mad like falling, going straight down, upside down, floating, zooming about… Mia totally loved it but I had to keep my eyes closed for the majority of it, the whole thing terrified me… Then even more, a Simpsons ride, in a little vehicle which you really really felt hurled about in. I had my eyes open for some of it but a lot of the ride made me feel sick, it was hard to hang on too with Mia in between us laughing out loud she enjoyed it so much. Crazy rides. What’s great about them though is that we can all go on together – the two thrill speakers of the family and then me, giant wuss bucket, as I can keep my eyes closed if I can’t handle it. 

Awesome – totally awesome.

Til next time, love and gratitude xx


meeting Shrek, Princess Fiona and Donkey – Donkey said “wassup Mia”


Megatron. He was scary


after the ride where we trained as Minions. Mia loved him 💛


the parade – so many of them waving at Mia and coming up to Mia


i got stupidly excited about this shop. so much stuff i wanted in here. back to the future, ghostbusters, the godfather, the sting, the breakfast club, even a sharknado t shirt… love this shop ❤️





another ride – we had to ride separately but it was still great


Doc’s transport from the third film

THE most famous De lorien the world


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