Just What I've Always Wanted

Hey! How's it going? For me, it really has been a whirlwind of a few months, and I cannot wait to write all about it. I think the most logical place to start is back in May with The Vamps...

Although VIP tickets come at a relatively large expense - okay, a huge expense - we decided as a family that VIP tickets for The Vamps would be the main Christmas present for my sister and I. Apart from the fact that the package included a meet and greet, the fact that Union J were touring with them meant that, in my opinion, it was simply a must.

We chose the Genting Arena, Birmingham on this occasion, as we've come to the conclusion that, if you happen to be a wheelchair user, the Manchester Phones 4U Arena  (formerly known as the MEN Arena) is utter pants. In my opinion, you'd probably be better off sat at home with a pair of binoculars pointed in the vague direction of the stage for all you can see, and experience, when in the accessible seating area. The Genting Arena, on the other hand, has accessible seating all the way along the side, and so at least you have a chance at being near the front. This way, even though  we had to spend over an hour queuing on a phone-line for an accessible ticket, the reward was managing to buy Seat 1 and 2 - deep joy!

My rough estimate of accessible seating area at the

Genting Arena, Birmingham

My rough estimate of accessible seating area at the

Phones 4U Arena, Manchester

The VIP experience began with a Sound check with The Vamps, Union J and The Tide (basically boyband heaven), and a crowd of only just under 100. Not a day goes by that I don't find another reason to appreciate my powerchair all the more, but this in particular was another occasion that made me even more grateful to Caudwell Children (http://www.caudwellchildren.com/) for providing me with such a magical piece of equipment. Well actually, I don't even see it as a piece of equipment or machinery anymore - it's just a crucial - yet extremely stylish - part of me that is the key to unlocking so many exciting opportunities. For the sound check, my Sister and I were in along with the rest of the small crowd, but just because there wasn't as many of them doesn't mean that they were any shorter. As I've said on numerous occasions - which in itself tells a big story - having my powered wheelchair means that I can rise up and be the same height as everyone else, if not taller! As well as being able to see over crowds at concerts and festivals, this is also great from a social point of view, as I can chat with people at face height instead of them having to bend down to me like I'm a three-year-old. Reaching the bar will also be another bonus in years to come.... Did I just say that? Surely not! Just kidding... sort of.....

After the Sound Check (which I highly recommend as an amazing experience), we went straight through to have a photo with The Vamps, and then, after a pizza and chips, took our seats for the concert.

Although my Mum has to spend the evening in the car - on her birthday! - with a good book waiting for us to come out, having a sister like Candice who's two years older means that we can go into the concert together and she can assist me with pretty much everything I might need (except toileting - she draws the line at that)!  It works well because we have mostly the same interests, and so she wants to go to these events too, making it a fun experience for both of us. I don't need a lot of assistance at these things, just the odd head-push-up or drink opening, but there is always that possibility that something slightly more major could happen, (urgent call of nature or sinister choke) and so my Mum tends to be close by just in case. Obviously, it won't be like this forever, and we're just working at the minute to set up a plan for a new way of using my statutory care hours to employ personal assistants in a different way. More to come on that soon....

After such an exciting Friday night, what better way to celebrate than to try out new foot splints that have finally arrived?! I've gone on and on about these over the past year, so I just thought I'd let you know that yes, I now have them; yes, they fit; and yes, they are a fully-functioning pair of splints! Not exactly killer heels, but hey, just what I've always wanted!

An example of my 'muscles on the outside'

I'm not sure that anything I write from now on will live up to the unbelievable excitement of the information that you just learned about my splints, but I'll try my very best. Part 2 of the German Exchange commenced in June, with our partners coming over to England for a week. It was wonderful to welcome Vanessa and Anna to Cheddleton after they gave us a fantastic time in Waldorf earlier in the year.  Again, it was an action-packed few days including trips Chester, Alton Towers, and even London.

How I spend a sunny day at Alton Towers....





 My Alton Towers German Exchange Crew 2k15

Although I've been to London on a fair few occasions now, I had never once attempted the infamous tube - until now. The plan was to travel back to Euston Station from Westminster, and as always, we had left plenty of time. I had a look on my phone to see which was the best route to take and noticed that, with a  few buses, it would take us well over an hour, however with a tube, it would take a mere 11 minutes. "Why not give it a try?" we said. Ha! After having negotiated our way through the back entrance lift of Westminster due to the main lift being out of order, we boarded the first train with no problems encountered, wondering why on earth we hadn't used this mode of transport before. That was, until we tried to disembark at our first destination. It turns out that a wheelchair user must be in a certain carriage opposite a platform ramp in order to be able to actually get off - would have been useful information don't you think?! As the announcements came that the tube was going to be delayed while they went in search of a portable ramp to 'disembark the wheelchair', people around started to get rather agitated. Seeing as though I was the only 'wheelchair' - not a person, you understand - in sight, there was nowhere to hide. Cringe.

 Tube time....

After that little mishap, we let out a huge 'phheewwww', and having to negotiate a couple of  lift and miles of corridors, we eventually found our next tube. Having picked the correct carriage on this occasion, we found ourselves next to a man who'd clearly had a few too many pints at lunchtime. He, as most people are, was fascinated by my chair, but decided to take it that one step further and grabbed my controls in an attempt to steer me forward. Thanks to a guy who politely, but firmly, told him to keep his hands off, no damage was done, however his intervention was not warmly received by our drunken friend. After a tidal wave of explicit language and violent gestures, it was finally our stop, and I don't think my chair has ever driven so fast.

If you think that was enough, just you wait.....

Having finally made it to Euston Tube station and letting out an even bigger phew than the first time, we went in search of the lift up to ground level, only to find out that such a thing didn't actually exist. After a slight panic on my part, with no alternative, we boarded yet another tube train, got off at Kings Cross, and then walked back to Euston Station. Remember that 11 minute journey I told you about? Add another hour to that and you might be getting close to how long it took us.



 We had to document the event, as I am 99.999999% certain

that I will not be taking the tube any time soon.

Never say never though!

I made it out alive!!!

This little London adventure also happened to coincide with Caudwell Children's annual Butterfly Ball taking place at the Grosvenor House Hotel. Using the train as a "wheelchair-user" is - touch wood - relatively straight forward, and so, after the compulsory caffeine and calories at Stoke Station, we can head directly to London with no issues.

A suitable way to start the day?

Seeing as though every time we go away - even for a night-stop - we look like we're moving house, the hotel right by the station is perfect for us, as it minimises the amount of suitcase hauling that has to be done. We've now managed to devise a method of packing most of my machines into the one suitcase, but this does mean that it weighs at least ten times as much, and although my chair is good, I've not yet managed to find a way of towing a suitcase!

After hours of hair curling, nail painting and chair blinging, our taxi arrived, and we headed off in style to the Butterfly Ball 2015! We tend to always use an Addison Lee taxi(http://www.addisonlee.com/) as we get a quote for the price beforehand; a text saying that they are ready for us (no trying to flag down a cab at the pavement) and, because of vertigo etc., I don't particularly like to travel sideways in a London Cab, and with Addison Lee, I can just drive straight into the back. The drivers have always been really helpful too! 

It's such a privilege to be an ambassador for Caudwell Children, to be invited to their Butterfly Ball is always a huge honour. As soon as you step/wheel into the ballroom, it's as if stepping into a whole different world of sparkle, glamour, and kind-hearted people who are all desperate to support an extremely worthy cause. To be surrounded by true legends such as Rod Stewart and Bruce Forsythe; to have the opportunity to meet some of my personal favourites such as Union J and Aston Merrgold; and to see Lionel Richie himself perform live are moments that I will honestly treasure forever.

 Purple Carpet time!

 

Aston hugs are officially the best.

 Aston Merrygold!;<3

 Mark Wright!;<3

Brucie and Winnie are just the most wonderful people ever

 The one and only Tito Jackson!

 The gorgeous (inside and out) Union J!;<3

The most exciting part of my night is being asked up on stage with John Caudwell to explain to the audience what my chair means to me and how it can make dreams come true.  I always hope that my little bit will help raise funds for other children to receive such a power-chair, and this amazing  night was no exception as we managed to inspire the guests to pledge thirty, yes thirty, wheelchairs - a total of £600,000!

The grand total of nearly £2million that was raised on the night will go a HUGE way to transforming the lives of so many whole families, and this unbelievable success was down to the generosity of so many people, and the outstanding work of the Caudwell Children Team.

I couldn't possibly publish this blog without including a photo of my gorgeous pooch, so here's Lexi picking some raspberries...

 It must be summer!

So many exciting things have happened over the past few months that I physically can't fit them all into one blog! To solve this little issue, I'll be writing again very soon to update you on all the latest gossip in my world, some of which includes a certain Robbie Williams - just what I've always wanted! Haven't you?

Write very soon,

Tilly,xoxox

Twitter/Insta: @ItsMeTillyG

RIP Angelique, my beautiful best friend -

love you forever xxx



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