Flying Beyond My Dreams.... Literally.

Well hello there! It's been a while since my last visit to Blogzville, but it really has been a pretty crazy time. It began with the German Exchange...

Ever since my sister took part in her first foreign language exchange with the school, I've been extremely excited about the prospect of this new adventure, but at the same time, always had that one burning question in the back of my mind - how on Earth are we going to pull this one off?! Luckily for me, I'm surrounded by a team of open-minded, supportive and enthusiastic people that live by the belief that anything is possible.

Just before Christmas, preparations began in order to be ready for a week's trip away this march as, as many of you may know, there is A LOT that needs to be done. For instance, the airline likes to know every little detail (voltage, battery type etc.) about every piece of medical equipment that one wishes to take on the flight, and for me, this is a fair few. My Dad is now a pro at sorting out our travel arrangements, so along with my German teachers, they battled their way through the paper work and ensured that everything was exactly as it should be.

My power-chair is obviously a huge part of my life, and so naturally, having it with me wherever I go is a must. Unfortunately, things do get a tad more complicated when you throw a plane journey into the mix. Due to my £20,000 chair having such sensitive light-touch controls so that I'm able to operate it, it's also extremely fragile, and so handing it over to a couple of men in high-viz jackets at the airport and then having to trust that it will be brought to you at the other end of your journey in a usable condition is quite a big deal. As there doesn't seem to be any real procedure for transporting electric wheelchairs by plane (such as a big box for it to go in or something), we have now devised a method of removing all parts of the chair that are the most fragile; placing them inside the chair as neatly as we can; and then wrapping the chair in cellophane within an inch of its life. Some people ask me whether I think that it's worth the risk of taking my chair away and it getting damaged. Why not just use my manual chair? But to me, that would be like saying, "Yeah! You can go on holiday! But there's just a small catch - you can't take your legs. Oh, and come to think of it, your arms will have to stay behind as well"

 Part and parcel of it all!

 



Usually we can get away with leaving the pole that operates my arm supports attached as it's reasonably sturdy, but this time, we were travelling to Germany on the world's smallest plane, which consequently had the world's smallest hold. For a moment, it was looking unlikely that I'd be able to fly at all, but as long as we made the chair as small as humanly possible, including removing the pole and the headrest, so that it would fit through the door to the hold with millimetres to spare. Phew!

My Dad is usually the one that takes charge of all things mechanical/chair related in the Griffiths' household, but for this particular jolly, he had to stay at home with the B&B, leaving us on our own to dismantle and reassemble my chair. Although uber-stressful at times, it was good practice for my Mum and I, as we're hopefully going to be taking a trip to LA together at some point to check out the prospective universities. Exciting times ahead!

Another huge bonus for us on this trip was that, because all other teaching assistants were otherwise engaged with family commitments etc., my sister Candice was able to come along to assist Mum and be that all important second pair of hands. It's also pretty handy that she's practically fluent in German, and so, not only was it a great experience for her, she could  help me out when I really was stuck too!

Everything worked out just as planned for the journey there, and we arrived late on the Monday night feeling very relieved. As the chances of finding a family in Germany with a fully-accessible house(including suitable bathroom facilities and so on) to partner me with were relatively slim, it was decided that the best option would be to find some accommodation within the town with everything that we needed. By some miracle, and dedication and determination by my German partners, in the very centre, they found an accessible flat that was fully equipped, even with a shower chair/commode! I think it may have been part of some purpose-built retirement accommodation, but hey - if it works! It was perfect for the three of us, and just a minute's walk from my partners' houses and their school. As it turned out, I was given two exchange partners as it meant that even more people could take part in this fantastic opportunity.



German Exchange 2015

 



Wilkommen in Waldorf!

The families of Vanessa and Anne were so lovely, but admitted that, before I arrived, they had absolutely no idea what to expect. Even though we weren't staying in their houses, after they'd seen what was needed, they even went to the trouble of  building a ramp so that I could enter one of the houses that had three massive stone steps! The other house amazingly already had an ideal ramp leading straight up to the front door. As the week went on, they quickly got to know what worked well, and planned some really great things for us to do. I honestly don't think I could have asked for better partners - and now life-long friends.

Friends for life

 

A visit to Stuttgart

Transport to and from the different cities was so easy, with every single bus being wheelchair accessible. Unfortunately, just like England, you still have to pre-book if you're a wheelchair user and want to travel by train, and so not having this little piece of information did cause a tiny bit of chaos, but nothing we couldn't handle.

Awwww:')

A visit to Heidelberg

The whole week was a huge success, and we are so thankful to everyone involved in making what seemed like such an impossible mission a reality. Apart from a small amount of confusion over my chair at Stuttgart airport, (Candice's command of German played a key part in convincing the airport staff not to throw my chair on its side and put it through an x-ray machine)! the journey back ran smoothly.  Coach travel is yet another challenge as I need a high-lift ramp and there is an extra £40 charge for this and there are not many companies that have such adapted coaches.  However, we have found Warrington's in our local area and they are brilliant and cover all our coach journeys now.  We arrived back in Birmingham in the early hours of the morning and hopped straight on our coach that our favourite driver Bev had managed to park right outside the terminal, and headed back to sunny Staffordshire - wunderbar!

As soon as we stepped foot - or wheel - inside our house, it was time to commence 'Operation Punta Cana', and time to frantically prepare for our holiday to the Caribbean, which was now only two days away. It's a shame really that I need my machines everyday because we could have just left them all packed, but no, it all had to come out, only to go back in the following day. We swapped our boots for bikinis, and scarfs for sunglasses, and made sure that we could squash in a few minutes for all the really important jobs - you know, eyebrows, eyelashes and nails. It probably wasn't the ideal scenario having two big holidays in such close proximity, but we still made it to Manchester airport by the Wednesday, unbelievably excited for our two week holiday in the Dominican Republic!

Towards the end of 2013, I was having one of my usual chest infections, and began to fantasize about a holiday in a Caribbean paradise, with white sand, blue sky, palm trees, and a turquoise sea. As I was recovering, I thought I might just do a little bit of research to see what was possible, and hey presto, six months later we were there! Obviously, a fair bit more planning went into it than that, but to cut a long story short, we ended up on the most perfect resort, with the  most perfect people, where every item on my tick-list was checked. It was that perfect in fact, that within a week of returning, we had booked up exactly the same holiday for this year!

We nearly always travel to the airport the night before and stay in the hotel there, as it just saves a lot of hassle and stress on the morning of the flight, and this time was no exception. We always take my manual wheelchair along as well, just in case there's a problem with my electric one, and it also means that I can access the beach - compulsory of course! It also doubles up quite well as a trolley for the bags around the airport....

The aeroplane seats aren't the most comfortable for me to sit in for nine hours, as the have next to no support, but as long as none of my family minded me stealing ALL their blankets and pillows, we got by alright I'd say.

Sisters on tour!

When we arrived at Punta Cana airport last year, they tried to tell us that my electric chair hadn't actually been put on the plane and was still sat in Manchester. "Don't worry," they said, "it'll be with you in a few days." WHAAATTT?!?!?! Thankfully, they just hadn't seen it in the hold (you know, as it's so small and non-zebra print and everything), and it was brought to us at the hotel just a few hours later. As you can imagine, those were a tense few hours.

After this little charade last year, it was a huge relief to arrive and have my chair delivered straight to me - even if they did throw it onto the luggage belt on its side! By some miracle, and thanks of course to my Dad's expert cling-film-packing-trick, it survived the blow, and we were in the accessible taxi and on our merry way in no time at all.



It does look like some sort of medieval torture implement, but I assure you

it's really just an 'aisle chair' for the aeroplane to help me get to my seat.

Who'd have thought we'd find a wheelchair-accessible taxi in

the Dominican Republic!

It's always a worry going back to a place that was so perfect for a second time, as you have no idea whether it'll live up to your first visit. There was absolutely no need for concern - this trip may have even topped the first! 

I honestly don't think I can find the words to describe how amazing this holiday truly was. If I said I enjoyed it, that wouldn't even come close to how I felt. The second we arrived, the party began, and we didn't stop until we were sat on the plane travelling home. Every day was spent either by the pool or on the beach; joining in beach games and doing the pool aerobics, and every night was spent dancing under the stars and being thrown out of the nightclub... Yeah, you read right. The one thing I didn't expect to happen to me during the two weeks was to be flung out of the disco, but before you ask, it was only for not exactly being the right age and having snuck in there... oops! It's gotta' be done at some stage I suppose....

Pool-side in paradise....

 

 Dancing the night away....

 

 





 

One of the highlights of my time there has to be the pool/foam party. If you imagine one of those typical American pool parties that you see on TV with music and dancing and a swim-up bar and a foam machine and glitter, that was it. When I saw what it was like (pretty crazy to say the least), I decided that I would just stand back and watch, as I can't really be independent in the water when it's like that, and I honestly didn't mind having a good old look at what everyone was getting up to. My Mum was more than happy to take me in, but I gratefully refused and sat at the poolside. This wasn't good enough for the hotel's entertainment staff. The main reason we returned to this exact resort was for the people - the Animation Team in particular are some of the most amazing people you will ever meet, and we now feel as if they're part of our family in the Dominican Republic. To them, me sitting on the side-lines simply wasn't an option, and so I was lifted straight of my chair by one of them, lowered down over a barrier, and into the arms of another young, muscly Dominican guy - sounds awful, doesn't it? I sat on the wall of the pool next to Mum, and she clung on to me for dear life while we partied away.

 High School Musical is the first thing that springs to mind

 

Hanging on in there....

But no, that still wasn't good enough. Within minutes, one of the Animation Team came bouncing over with an airbed for me try, and so that's exactly what I did. As you can imagine, it wasn't really the easiest thing, so in the end, I ended up in the pool, smack-bang in the centre of the party. And to think I wanted to just watch! .

I personally believed that it was bordering on illegal to leave the Caribbean without having been on a boat trip, so with that in mind, we booked a trip that left straight from the beach with no 3 hour (no-accessible) coach trip involved. We did the exact same trip last year, but it was so magical that we just had to do it again. The first question is obviously, how am I actually going to get on board this boat which is half way out to sea? This is where the manual chair comes in as, as much as I'm all for talking my electric chair everywhere with me, carrying it over the waves might be just a little step too far. I was, once again, carried over the waves and lifted aboard by the welcoming crew.

Just another day in paradise

 A picture from last year, but you get the idea.... pretty cool huh?

My portable cough assist also came in particularly handy on this day, as my chest had filled up with secretions, and without it, I might well have had to stay on dry land (next to a plug socket).



Such an essential - and now well travelled - piece of equipment

 



As well as snorkelling and a visit to see the sharks, the boat trip also took us to a picturesque lagoon where we could swim amongst the starfish in the natural swimming pool. It's in a particular part of the island that has not yet been built on, and so is stunningly peaceful and serene - basically, it's paradise. In order to get down into the water from the boat, I had to be lowered down over the side by the guys crewing the boat in something called an Emergency Transfer Sling. For those who have never seen anything like this, it's a sort of seat, but made out of fabric (with lots of support), and has handles for lifting around the edge. It's so easy to use with two people carrying, and makes those lifts that would otherwise be impossible, possible. It's also really comfy for me, therefore considerably reducing any risk of injury not only to the people lifting, but it's probably a fair bit safer for me too. Once in the water, my Mum holds onto me so that I can be upright and see what's going on.

Mi familia;<3

 The 'Emergency Transfer Sling' in action

The great thing about going on holiday is that it gives you the opportunity to experience new things, for instance, beach parties with music and people painted with glitter from head to toe - you don't see many of those in Staffordshire now do you! Once again, I was carried over the sand in my manual chair by the animation team, and parked at the side of the dance floor with a perfect view of what's going on.

 

Okay, so maybe on this occasion, sitting on the side-lines

wasn't all that bad....

 



 

As you may have guessed, I don't get to stay there for very long....

 

As soon as the music started, I was picked up in my chair and I literally flew into the centre of the dance floor, where I stayed for the duration of the night. Without my electric chair, I not exactly able to move any parts of my body to dance - I don't even have my arm supports to help me lift my arms. Instead, I have to rely on passing Canadians to help me throw some shapes.

My replacement arm supports - do you think they'll do?



 



The second beach party (the following week) actually happened to be our last night, so naturally, we didn't hold back. The same process of being carried onto the beach by young, fit Dominican guys was repeated - it's a hard life, I know - but after a short while of just dancing down on the sand, we had to take it up a notch. I'd seen people up dancing on the podium before, but I'd never thought for one second that that would be me. I was lifted in my manual chair up on to the mini-stage at the front of the beach, and partied the rest of the night away just there - it was hard to believe that I wasn't dreaming!

 

As I said earlier, the main reason that we returned to this wonderful place - apart from the stunning scenery and gorgeous weather, which is a bonus - was because of the fantastic people that we met whilst there. Not only are the staff so positive and energetic 24/7, but they're also so open to the idea of me and my chair. Before we arrived, many of them had never even seen a power-chair like mine, and were, like all of us, blown away by it. There was never once any hesitation as to how to approach me, or even any fear that I might break if they even glanced in my direction - never mind if they lifted me straight out of my chair and up in the air (which did happen on a number of occasions)! They embraced our whole family as part of their own, and that - alongside a refreshing belief that anything is possible with a bit of teamwork - is really what makes this holiday so special.

Our special meal with the Animation Team

 

I don't know what it is about holidays, but during that two weeks, I was asked more times about 'what had happened to me' than I have been in my whole life put together. Some people would describe this as atrociously rude and obscenely insensitive, but I think it's great! There's so often this notion that when talking to a wheelchair user, one must never state the obvious, but I don't see the harm is in being interested (obviously this is only my opinion and others may feel differently)? Whether it was the Caribbean air or just the rum punch, having everyone feel that they could approach me and speak so openly about my chair etc. was so uplifting, and I often found that they had their own story to tell as well. The irony is that, the more my chair/disability was spoken about and acknowledged, the less visible it became.

Just one of the many fantastic people we met during

our time at Ocean Blue and Sand

 

¡Hasta luego Punta Cana! See you next time;xox

 

Now that we're back to reality and slowly descending from cloud 9, I should be able to blog again in the very near future about a number of very exciting things, including our Meet and Greet with The Vamps!

 

Write soon,

 

Tilly,xox

 

 

 



 

Half-term Catch-up

Half-term is here is at last, and so I now - finally - have a few spare minutes to return to Blogsville. These past few weeks have flown by, and I cannot believe that I can now safely say that it's only 310 sleeps until Christmas! Although this is very exciting, we do have a lot of equally amazing things planned before then for 2015.

Rewinding a few weeks, I think I mentioned in my last blog about how I still didn't have my splints that I was cast for LAST AUGUST? Well, now I do, but I may as well not have them. They are still completely wrong, chewing my feet to bits in a matter of seconds, therefore understandably, I don't wear them all too often. For those of you that are new to my blog and/or the challenging and charming world of disability, 'splints' are basically a way of keeping my feet straight by encasing them in hard plastic - I call them my muscles on the outside. I would ideally like to keep my feet 'shoe-shaped' for as long as possible, and so I try to wear my splints for as long as I can tolerate them in the hope that I can maintain their current position. If I'm not mistaken, the main reason that they turn around is because the muscles on one side of my foot are just a tiny bit stronger than those on the other side, thus creating a kind of 'wind-swept' effect. Now all we have to do is summon up the courage to book yet another appointment at orthotics to see if they can maybe, you know, make me some splints that fit? Yeah, it does help occasionally....

 Small, but not so perfectly formed...

 

 I'll never get the bag to match!

On a much less painful note, since September, I have been involved in the Arts Award project at the New Vic Theatre. I completed the bronze award back in the summer term last year, and am now, already, nearing the end of the silver award. This level consists of two units, one of which being a more personal project where you can chose any of the arts that you enjoy and look at ways of honing and developing your skill - I'll talk more about this in just a moment. Unit 2 is something called 'Arts Leadership', which involves identifying an area within the theatre that interests you, and then taking on that role whilst putting on a play. My particular 'job' is very much based on social media and publicity, and so I thought I would take this opportunity to politely ask if you would be so kind as to check out the blog for our performance (http://tcscgfanclub.blogspot.co.uk/) and give us a follow on twitter (@TCSCG_FanClub). It's interesting to be on the other side of the curtain, and see what goes into putting on a professional performance like this.

 

Oh yes, we have our priorities right!

New Vic Arts Award Team - 2014/15

For the main part of Unit 1, you had to set a target for yourself that could be achieved by the end of the course, so I thought to myself, why not write an album? I've been writing songs for over a year now, and feel that to have some sort of record of them would be a great goal to reach.  Having said this, for the past few weeks I have been focusing much more on my composition for GCSE Music. For my options at school, I definitely wanted to choose subjects that I could complete as independently as possible, for instance, I may have struggled slightly handling a coping saw if I had taken design - not impossible though I guess!

Our main aim throughout my school journey has been to give me as much independence, as possible, and this mission still continues as I pass the half-way point of year 10. I've always had one-to-one support from a teaching assistant at school as, when I was very young, I was pretty much permanently attached to my suction unit. Over time, I have found different and ultimately better ways of managing my chest infections and secretions, and so am looking to start leaving my suction unit somewhere within reach instead of carrying it round on the back of my chair like a pack horse - not a good look. I'm also trying find ways of being more independent both in class and around school, basically practising for the big wide world, but in the mean time - with the greatest respect - not having and adult constantly attached to my body-work has already improved my social situation.

Overnight, you could maybe say that my need for care slightly increases due to the fact that, when lying in bed, I have no arm supports and no power-chair to assist me. I instead rely on the help of my Mum with things like moving my arms/legs, lifting my head, and other little - but essential - jobs like that. When I'm in the throes of a chest infection, we've discovered that to set the alarm for 02:00am and complete a cycle of my various machines is an effective way of keeping my chest clear. As you probably know, the morning is the worst time of day if you have a cold, and it makes sense really because you've just let the secretions pool and settle in your lungs for anything up to twelve hours. My coccyx was also a big issue before my injection in December, maybe needing to be moved up to fifteen times a night to try and minimise the agony. To help Mum out, we've had what we call 'night-sitters' coming in for years now, and just recently, the number of nights that we get per week has been increased, meaning that a good night's sleep can now - more regularly - be had by all.

The last week in January is always a pretty busy one for the Griffiths household, as we have not one, but two birthdays in the family. Candice's comes first, and then mine follows just three days later, therefore we decided that the Trafford Centre would be the perfect place to celebrate - what could be more perfect than a bit of retail therapy?! I met up with one of my SMA friends whilst there, and it's great to be able to have a chat with someone who has had pretty much the exact same experiences as you. I'm not saying that we sit and mope in solidarity about how terribly sad and depressing our lives are (which they're certainly not), but it's nice to have someone to compare stories with who just gets it. Social Media is another great way to keep in touch with my SMA friends, and a group has now been set up by one of the girls for teenagers with SMA to talk to each other, but also ask any questions that we might have.

SMA Sisters;xoxox

 

As I said before, it's now half-term, and so the alarm clock has been set for two hours later, and everything is just ever so slightly more chilled. We spent Saturday afternoon at the Regent Theatre watching 'The Curious Incident Of The Dog In The Night-Time' - honestly, you'll have to see it. I read the book just over a year ago and was blown away by the power of it, and how a real insight is given in to the challenges faced by someone living with Asperger's. I couldn't even begin to imagine how they would transfer such a complex story to the stage. If, like me, you have very little knowledge of Asperger's and Autism, it really is worth a read.

We did have quite the culture-vulture weekend really, what with a trip to Buxton to see the Russian Ice Stars perform 'Snow White' on Sunday. With it being half-term, there was quite a number of young children sat around us, each of them fascinated by the magic that is my electric chair, but I suppose at least I provided a bit of before-show and interval entertainment! I really don't mind their cute little stares, but it's so much easier once you engage in conversation with them. We started to tell them about how I once skated with Torvill and Dean, and I immediately saw their parents' faces relax - there certainly is no harm in being interested.

Video of me skating with Torvill and Dean: https://www.youtube.com/watch?v=k4j7YxBfA98

In hind sight, this choice of jeans probably wasn't the best

 for a trip to an ice rink in February....

Going back to books for a second, you may have spotted a guy called Shane Burcaw in the press lately? If not, he is a young person with SMA (Spinal Muscular Atrophy - my condition) from the USA who has recently written and published a book about his life called 'Laughing At My Nightmare'. I couldn't believe how similar some of his stories and points of view were to mine, and his attitude towards life is exactly what I intend to always have. Again, definitely worth a read.

I think I also mentioned in my last blog that my ultimate dream is to go to university in California, and following that, we sent a little email to the charity over there that deals with SMA families (Cure SMA) to see if they knew anyone who was going through/had been through the system already. We got a reply almost immediately, and the positive response has made my goal seem like even more of a reality. It will be a long, hard journey, but I'm ready to take you with me all the way.

I think that pretty much sums up the beginning of 2015 for me and hopefully I will be able to give you an update on some of my upcoming adventures in the very near future.

Write soon,

Tilly,xox

P.S - Check out the new name of my blog!

#DreamsWheelsAndKillerHeels

Goodbye 2014, Hello 2015!

Christmas Eve is usually a day spent making last minute preparations and going to the Crib Service at our local church, however this year was quite different. I think I may have mentioned before that I was going into hospital on the 24th for a big injection under anaesthetic, hopefully to try and relieve some of the pain in my coccyx - even though it was the day before Christmas, it was DEFINITELY worth it. We left the house at 7:00am in order to be on the ward for half past, and luckily, I was first on the list. If this isn't the case, there can be an agonising wait of anything up to a fair few hours, and not being allowed to eat certainly doesn't help matters. Fortunately though, not an issue this time, and pretty much as soon as I arrived, regular checks were done and I was whisked away down to theatre.

After being dropped off in the waiting area by the porters, usually it's literally only five minutes before being taken through. There was some confusion this time about what type of anaesthetic I was supposed to be having etc. and I think the longer you have to wait, the more anxious you become. When I was younger I used to scream at the top of my voice all the way to the operating table, but now I'm nowhere near as scared. I know that I am in safe hands and everything will be fine.

On more than one occasion - after having had a small operation or just a GA - I've instantly been sat up chatting and eating a McDonald's, but this one unfortunately didn't go quite so well. I've written about vertigo before, and how utterly horrible and debilitating it is - this time was no different. I felt it as soon as I came round, that feeling of being aboard a steadily rocking ship, and immediately knew that it was only matter of time before it really kicked in. As I suspected, the world did a full spin just as we were heading up the corridor on the way to the car.

Having not opened my eyes for the whole of Christmas Eve, it was touch and go as to how the situation would be on the big day itself, and so it was such a relief when I did open my eyes at 3:00am to find that the world had finally stopped spinning!  These episodes can last a lot more than 24 hours, so this really was a Christmas miracle.

The day was lovely, and having my Nana staying with us made it all the more special. Santa was extremely generous to us all, and even Lexi had a few presents to open on the morning! He also knew that I was very passionate about my keyboard and music, and so brought me a recording/editing program for my computer. Because I can't press down many finger when I play, I do a lot of recording a layering the parts in to make the music sound fuller. My Dad prepared a spectacular Christmas feast - as always - and I could maybe be even go as far as to say that it was the best Christmas ever!



Lexi in a Winter Wonderland!

One of the things I love most about Christmas - apart from the chocolate of course - is seeing our family, and believe me, that's a lot of people! Uncle Martin, one of my Mum's brothers, came all the up from Brighton for a night-stop. I really love seeing him, as he was one of the first people to take me seriously about my dream of going to university in California. He directed me to Fulbright Commission and various other websites that may help me to get there, so I guess one of my New Year's resolution is to get in touch with them and see what they have to say. It might seem a tad early, but with all the extra things that would need organising, I don't think that's possible!

One day in particular we had an extremely busy house, with nearly all of my Dad's side of the family coming to visit! It was another great day, with yet another spectacular buffet, lovingly prepared by my Dad.

 The Griffiths Clan!



On that day we were also visited by my friend Angelique and her family. You may remember me mentioning my amazing friend from Holland who we met at a Union J concert in 2013, and have since kept in contact with and seen a couple of times in the past year. We both love concerts/festivals, and also happen to both be huge fans of Ollie Marland! We all look forward to seeing Angelique and her family in 2015.

Ollie, Angelique and I at Fusion Festival - Summer 2014

What a fantastic end to a fantastic year! I really do hope that everyone had a wonderful Christmas, and wishing you all an amazing 2015.

Make this the year that you truly fly beyond your dreams.

Write soon,

Tilly,xox

 

A Winter's Tale

I honestly cannot believe how fast Christmas has come around this year - not so long ago I was preparing for Halloween, and now it's only a matter of days until the big man himself arrives! 2014 has been a full-on, yet fantastic year, and I can't wait to find out what 2015 will bring!

I'll start with our fabulous half-term holiday to Great Yarmouth. As a family, we've found that Haven holidays are the perfect place for us to enjoy a little week away at the sea-side as they're not only fully wheelchair accessible, but they also allow doggies! Our caravan was ideal, completely clean and providing all things necessary for a short break. It was just minutes walk from the beach - much to Lexi's delight! - and had direct access to the town which was, again, fully wheelchair accessible.

Lexi on the beach in Great Yarmouth!

As Great Yarmouth is quite a way down, we took the decision to stop for a night on the way at a Best Western hotel in Cambridge. I strongly suggest these hotels to anyone either needing wheelchair access, or even just pet owners. It was in a great location - only a short/wheel walk from some of the town's main attractions! We knew that it was practically illegal to leave Cambridge without having a punt down the River Cam, and so of course it was a must. We found the place and, after being lifted out of my chair and carried down the steps onto the quay, we boarded the punt. It was pretty difficult to get comfortable at first, but once I did, we were shown all of the famous sights and given background information on some of the colleges that are located just by the river.

Made it on to the punt!

 

 

 

 Lexi!!

We also had a look around the rest of Cambridge, but I think I was most impressed by the stone steps that transformed into a platform lift before our very eyes - I've never seen anything like it! Sometimes, I do agree that things that are needed to make places wheelchair accessible can be quite unsightly, and just not look right within the surroundings. In my opinion, these Harry Potter-style steps solve all of those problems...

The rest of our holiday was brilliant, including a trip to the Halloween circus and a boat ride along the Norfolk Broads - it definitely confirmed our thoughts that Haven parks are the best place for us.

This is the life!

Our bonfire night didn't turn out quite as we'd planned as I decided that it would be a good idea to have an out-of-the-blue chest infection that very morning. Usually we are given lots of signs, warning us that some sort of chesty thing is on the way, but this time there was nothing. I often have a few little secretions on my chest in the morning that are easily removed with the help of my machines, but on this occasion, they would not budge! They started to gradually block my airway, meaning that my oxygen levels were dropping below 92%. I usually sit at around 99-100% and so this is a clue for us that something isn't quite right. My breathing began to get extremely shallow, I started to sweat, and my chest became very painful. Because we weren't really making any progress, we thought that we would give the 'out of hours' team a ring. After a short while of my Mum on the phone trying to find the right person to speak to, we eventually discovered that the 'out of hours' team don't actually come on duty until 9 o'clock! Once we recovered from this outrageously shocking news, it was suggested that we call the Children's Intensive Care Unit to see if they could give us any advice. They were great as usual, so caring and understanding, and helped us to get through the day without having to be admitted to hospital. This meant that we could all still enjoy my Dad's fabulous firework display, even if I did watch through my bedroom window to avoid the smoke!

Despite feeling much better by the next day, the Doctor suggested that we still popped in to double check that everything was okay as we had never previously experienced a chest infection so sudden. They were incredibly thorough, taking bloods, x-rays etc. not leaving any stone unturned. It was concluded that there was in fact a chest infection at the base of my lungs, and that the pain was caused by a bit of pleurisy.

Looking back, my Mum does feel that it would have been a wiser move to call the ambulance straight away, as of course, they don't actually have to cart you away with blue flashing lights if it's not necessary - they can just give you a hand at home.


For the past year or so, I haven't really had any real friends at school, but recently, I think that situation might be improving. We've had lots of meetings about various things, but our main goal has been to significantly increase my independence around school. It's going to be a long process, but it will surely help with my social situation not having an adult glued to me 24/7. 


To round off November I had a very special stay at the Donna Louise Children's Hospice in Trentham. I was booked in with the other girls from the Youth Club, and had planned a weekend of pampering, DVDs, chocolate and plenty of other girlie things. I stayed on my own for the first night, and then my Mum and Candice arrived later the following day. A lot of people are worried by the word 'hospice' and think it must be a place filled with tubes and machine and other scary things, but really, it's quite the opposite! It's an amazing place where not only I can have a rest, but also my Mum can actually have some time either for herself or to spend with my sister knowing that I am in safe hands.  I was aware that there was going to be some sort of surprise taking place, but never could have guessed what was to come. After the Christmas Fayre and a Chinese takeaway, were all told to stay in the dining room and await our visitor. I have never been so shocked in all my life!

I may have mentioned Ollie Marland one or two times before, but for those who don't know, he's an up and coming singer from Stoke who has now moved to London and is in the process of becoming a huge star. He arrived at the hospice alongside his Mum and Dad, had such a natural conversation with all there, and then had photos with everyone individually. I first met Ollie just over two years ago and since then he has always been so genuinely lovely. Just to top it all off, he then went through to the hospice's teenage lounge and sang a few songs for us all! It honestly was an evening I'll never forget - I'm so grateful to Ollie for taking time out of his extremely busy schedule to come and see us, and also a huge thank you to everyone involved that made it possible (especially Mel!).

Festive Ollie Marland photo!xo

"Ollie Ollie Ollie!"

Video of Ollie's visit: Part 1 - https://www.youtube.com/watch?v=JP8Bhbwrbkc

                                   Part 2 - https://www.youtube.com/watch?v=qssBrXXeDDA

Back in the summer, I'm pretty sure that I spoke about going for my orthotics appointment to be cast for my new foot-splints. This is a relatively simple process involving making a sort of plaster cast around my leg, and then cutting it open at the front. These are then sent away to be made into proper, plastic splints. On arriving at my fitting appointment earlier on in December, I took one look at my new splints and knew immediately that something was wrong. They didn't even look like my feet! As I guessed they were nowhere near to fitting, and so they were left with no choice but to re-cast, meaning that another trip to orthotics is now on the cards for the new year. As if I don't miss enough school as it is!


As soon as my orthotics appointment was over, it was time to get ready for the panto! We were lucky enough to be given some tickets, again by the Donna Louise Children's Hospice, for the Regent Theatre's Dick Whittington, and so, as a family, we went along for a festive treat. I've always loved the Regent pantomime, and this year certainly did not disappoint.

A couple of weeks later we were invited, again by the DLC Hospice, to attend a meet and greet with the cast from the panto, including Jonathan Wilkes, Louise Dearman, and Christian Patterson. I still can't believe how they'd given their heart and soul to two performances already that day, jumped straight into a taxi (in full costume and makeup), spent time at the hospice chatting to each person individually, and then went directly back to the theatre for a third performance! They were all so genuinely lovely and interested, and I also feel very privileged to have been able to see Louise (aka Alice) sing 'Let It Go' so amazingly live in such an intimate setting.

"Oh no he didn't!"

With school having finished last Friday, what better way to celebrate the beginning of the holidays than to go to the Union J CD signing at Morrison's in Festival Park! Having got up at 6:30am - in the holidays! - we headed to Stoke as early as possible, fully prepared to stand outside in the freezing cold for 7 hours solid. We went into the entrance just to check that we were in the right place, and were immediately greeted by Paul the Duty Manager. I am eternally grateful to him and his colleague Lorraine for letting Candice and I stand inside to wait for Union J - they looked after us so well throughout the day, and I can't thank them enough for everything that they did.

After a long, but extremely worth-while wait, Union J arrived and, seeing as though we were now at the front of the queue, they saw us first. We were instantly recognised, and honestly lost count of the amount of hugs we were given! A group photo was taken by the press, and then I had selfies - oh yes, selfies - with each of them on my phone! They were continuously giving Candice more and more hugs, and having a really natural chat with her. My lip has this terrible habit of going completely numb whenever we meet someone like this, making conversation and smiling slightly tricky, but I don't think anyone noticed...

 

Selfie time!

We never expected anything as long as the amount of time that we had with them, and still can't get over how amazing the whole experience was. The entire team from Morrison's and those supporting Union J were fantastic, making the day perfect in every way from start to finish.







A long day, but DEFINITELY worth the wait!

 



We're now on the real countdown to Christmas, but I do have one more thing to tick off my to-do list before we get there. My coccyx (tailbone) has been unbelievably painful over the past few years, but thanks to my special mattress and these particular anaesthetic and steroid injections for pain relief, it has been manageable. Presumably due to the injection having warn off, it has recently become more excruciating than ever before, and nothing seems to be helping. Luckily it only hurts overnight in bed, and so during the day, whilst in my chair, I am pain free. I have been booked in for my injection on Christmas Eve, with a view to being in and out in as little time as possible. If all goes to plan, I should be all done and home by mid-afternoon, all ready for the following day!

I really do hope that everyone has a fabulous Christmas, and fingers crossed I'll be able to post again sometime in the New Year.

Write soon,

Tilly,xox

It Takes My Breath Away...

It's been a busy few weeks since school started up again, and I'm definitely starting to feel the difference now that my exams are looming in the relatively near future. We've now completed the fourth week back, but I can safely say that by the fourth day my chest had already filled up with secretions, meaning all of my respiratory machines were, once more, called in for action. Everybody seems to get some sort of cough/cold at the start of term, especially after the summer holidays, but the difference for me is that I find it more difficult to get the rubbish up and off my chest. Luckily, thanks to all of my amazing equipment and round-the-clock intervention, I was able to stay well enough to enjoy of the exciting things that we'd planned for September so far...

The first on our list was The Donna Louise Children's Hospice's 'Shining Stars'. I thought that this would be a great opportunity for me to have a go at performing some of my own songs on the keyboard whilst singing, as it's not something that I'd ever done before. I was worried about my hands being too cold to play - as I've said before, they're useless when they freeze - but in actual fact, they were so sweaty because the nerves that my fingers were slipping off the keys! It wasn't a big event by any stretch, but for me it was a chance to build confidence and have a go at sharing the thing that I love.

My debut!

A few days prior to this event, our family received a surprise invitation to the Crème de la Crème Ball in Alderly Edge hosted by Ashley and Dawn Ward. These two people have worked so hard over the past years for Caudwell Children, and now host an annual ball to try and raise as much as they can for the charity. The room looked fabulous, decked out in the style of the French Riviera, and it truly was a magical evening. I was asked to do a little speech about how my chair has transformed my life, and how much it would mean for other families to receive one just like it. I do get slightly nervous when I talk to quite a lot of people like that, but I'd definitely say that I was more nervous when performing on the keyboard to only 20 people! When I speak about my chair, I don't ever write anything down, but I find that once you're up there it all seems to flow - except that when under pressure, I tend to come out with really random phrases like 'the cherry on the top!' which I've never said before in my life.... My Balder (power-chair from Etac) is such a huge part of my life, I have no trouble telling people about it from the heart. The compare decided then to ask if 20 people could pledge £1000 each (with 12 months to fundraise if needed), together they would be able to buy a child one wheelchair which would change their life drastically for the better. An astonishing 40 wonderful people raised their hands meaning that Caudwell Children could provide two children with life-changing wheelchairs, which was honestly better than we could have ever imagined! Just when you think all of the amazingness has happened for that night, one extremely kind and generous gentleman put his hand up and said that he would like to buy one whole chair for a child - that's £20,000! People often say to me that that sounds awfully pricey, but if you break it down, it costs next to nothing per day. I get into my chair at 07:00am and I'm in it until at least 10:00pm, but if attending a ball, that will definitely be a lot later! Even more astonishing, after the big auction, another big-hearted gentlemen donated  a further £20,000 for a whole chair, bringing freedom and independence to a child's life. 

 Matt Evers from Dancing On Ice!

 

Anthony Cotton (Sean) from Coronation Street!



It was a magical evening, with beautiful décor and surround by a whole host of celebrities, but the kindness and generosity of some people in this world really does take my breath away.

 

It was a big bump back down to Earth on that Monday morning at 06:00am after our fabulous weekend, but I guess we had to come down from cloud 99 at some point. My little chest infection started to get gradually more fierce as the week progressed, and by Wednesday I needed my cough assist whilst at school. I've said before that it is a huge piece of kit, and unfortunately this means that if I'm needing it quite regularly, I  have to be at home. We're hopefully getting a more portable version soon, and so fingers crossed it will be a lot easier. When I was off for nearly six weeks last year after my surgery, my Teaching Assistants made sure that I was kept up to date with all the work, and even came to the house a couple of time to make sure I was okay with everything. They've continued to ensure that I stay on top of all my work when I'm off, as it's rubbish when you get back after a long period of time and don't have a clue what's going on. People may look at me and think 'What's she having time off for? She's hardly ill at all!' but we find that coming out of school as soon as we can, and working round-the-clock to try and clear my chest seems to - touch wood - keeps us away from the hospital.

Just one of the machines in the tool box...



On a normal day there is quite a high risk of me choking, involving streaming eyes, red face, unable to speak, and basically, it takes all my breath away. This happens from time to time, but thanks to my suction unit (secretion hoover, a bit like at the dentist), cough assist etc. it can be quite easily solved. We do take it seriously though, as there can be severe consequences.

Luckily, we managed to keep this little chest infection at bay, meaning that we were still able to travel to South Wales for the family gathering at my Nana's. Car journeys are usually the worst thing for a dodgy chest, and so it probably didn't seem like the most sensible idea to drive 3 hours down the motorway, but as long as I don't fall asleep, it's generally okay. The party was great, and the weather was perfect for sitting outside and enjoying the last moments of summer. Unfortunately, the person living in the house behind also though that it was the perfect day to light a bonfire, consequently, once more, clogging up my chest! But hey, it was still a lovely evening and, with a few extension cables and a cough assist in the back garden, nothing can stop us!

Apart just the huge amounts of school work piling up, the other reason for the delay on this blog is that my arm supports went into 'melt-down', most likely caused by overuse! The company (Neater Solutions) were fantastic and immediately sent out a replacement set to take over whilst they set me up with new and even improved arm supports asap. Fortunately my fab Dad was able to take care of the oily bits and carry out the swap.  Having to last two days without my arms - literally, next to no use of them - does make you realise just what an important part they now play in my life. Everything from feeding myself, to writing, typing, scratching my eye-brow, to playing the keyboard is snatched away, and with it goes the majority of my independence. Interestingly, my breathing is also affected with my arms and shoulders motionless all day, and even my posture, straight away starts to deteriorate, and my head control is significantly weaker - it doesn't seem like your arm movements would affect so much of your body, but they really do!

All fixed up with the temporary set of arm supports for now, with my chest feeling so much better and desperately trying to catch up on all the work that I couldn't do whilst I was out of action, but hopefully I will be able to blog again in the very near future.

Write soon,

Tilly,xox