One Day

If you had one day to live, how would you spend it?

Many people say they would want to live it normally, as they would any other day. But if you knew that you only had today then would you really? I know I wouldn't.

I'd make a special effort to wake up at 8/9am so I really could make the most of my day. I'd ring absolutely everyone, all my close friends and family so I could spend it with them. And I think I'd like to get the train to Weston-Super-Mare.

A lot of my childhood memories are at Weston with my family; mainly my Mums side. I have so many fond memories of donkey rides, sea world, the pier and Ben building us sand sculpture cars. It's definitely one of my 'happy places'. I spent my 17th birthday there with my family last year, and to some of you that may sound far from exciting but I honestly had the best day. They have the most amazing milkshake shop just outside the centre which we always go to, and the pier is always a good shout.

Anyway, I would definitely go to Weston-Super-Mare and I would definitely grab a milkshake and I'd also go to the pier. Ahhhh so much fun. And I think I'd just get some chips and gravy, and eat on the sea front wall with everyone.

If I had one day to live that's how I would spend it, not too complicated, but spent with the most important people in my happy place.

As for having one day left to live, that won't be anytime soon and if it ever does come around, I'd like to think I'd be at a decent age, so I probably wouldn't be able to do all that in reality. So actually if I did have one day to live, I'd like to be at home, in bed surrounded by my family and friends, and theres nothing more I'd want! (Although a a pizza definitely wouldn't go a miss. (I hope that's the right term).

I believe that you should live every day as if it's your last. You leave behind the history of yesterday, and determine how you will use todays energy; because all you have is now, and you have to live for today and make it so beautiful that it's worth remembering. Today will never come again so make good use of it. You will only regret it if you don't.

Life is beautiful; count your blessings, not your problems.

Love, Erika

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Charities, what would we do without them? In all honesty, I never really payed much attention to charities before I got poorly and that sounds absolutely awful but I think most people have this perception; that charities don't do what they say they do and actually the money doesn't go where you're told it does..I was one of those people. 

When you're chucked into a situation that you weren't expecting you feel totally alone and you really don't understand until you're in it. Charities are one of the most incredible things to ever exist. They have the ability to help people that need it and provide support as well as hope. Unfortunately a lot of charities don't get the recognition they deserve and I've only had the pleasure of working with a few charities that really do deserve a lot of recognition; Rainbow Trust, Molly Olly's Wishes, The Family Fund and Make A Wish Foundation. I've written about my experiences and wishes with all of these charities on a previous blog post Make A Wish. 

I've currently been working on a project with the Rainbow Trust to get them more recognition by creating short films with other families. My support worker Amelia is absolutely incredible and before Amelia joined, I had a lady called Oonagh. Both incredible women. Unfortunately Oonagh left and Amelia took over, and I don't take to new people very well when it comes to my illness but Amelia honestly is just amazing and we just clicked. 

The thing with Amelia for me is that she's not a friend, she's not family, she cares, but in a different way so you're not afraid to tell her how you're feeling because the connection is different. When you speak with family and friends, you're worried. You're scared because you don't want them to be sad because of what you've spoken to them about and you don't want them to get hurt or be reminded that you are ill. You live with your family every single day, you see your friends every single week, you want yourself and them to be happy and to be honest all you want is to have a nice day so you don't really want to talk about. I really don't know if I'm explaining this very well at all, and I know what I'm trying to say but I just can't put it into words so I'm just praying you all read this and understand what I mean.

Without Amelia, I'm not really sure where I'd be. It's not just the emotional support, it's about having someone that's there and you're not afraid to let them in. Thanks to Amelia, I'm able to enjoy myself more because I have her to talk to. We laugh 90% of the time, we smile a lot, and we talk often, and that's the best way to be. She can't take my disease away, but she can be there for the bad days and the good days, to make everything a little easier and a lot more enjoyable. 

A lot of what I'm saying will probably be spoken about it the videos too, from not just me, others. There are so many families that Amelia supports. And I'm so glad that I could take part in this video as well as writing this post, to help raise awareness; because without the sponsors, we have no Amelia, and without Amelia we have no support.

Below is the link to one of our short films for Rainbow. Please feel free to check it out and pass the link on.

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Love, Erika

What matters is today..

Some of you may be new readers and some of you may be returning readers... either way, welcome!

I'm Erika and this is my blog, C'est La Vie. I've always loved writing and this is the place where I get to write and share things as well as being able to create awareness for PH. 

I've been writing my blog since July 2014, and my very first post was My Story,which went live on the 4th of July 2014. All though that was the start of 'Tinkerbellaaaaa', I then changed my blog name to 'C'est La Vie'. 

After a year of writing on C'est La Vie I decided to take a break and my last post was on the 1st of July 2015. Shortly after that post went live I actually made my blog private which took it off the internet completely and no one could access it. At this time, I had a lot going on, and all though my blog is to share my life through writing I only really share a small percentage which mainly focus' on my disease. It would be merely impossible to share absolutely everything and I always have tried my best to share as much as I can but there are some things I wish not to share and to keep private which I'm sure you can all understand. I was unable to write a post on what was going on and why my blog was coming offline, mainly because you wouldn't be able to access my blog to read it and also because I could barely string a sentence together, nothing made sense, and I tried so hard to write a Facebook status but I just couldn't, I would just sit there, staring at a blank screen trying to figure out what to write. In the end I wrote maybe a line on Facebook saying I would be taking a break and I'd be back soon... 

Well here I am, 9 months on...I'm back and I'm ready. 

People would ask me when I was gunna come back and honestly I was never sure if I ever was going to come back; but since working on a project with the Rainbow Trust, it's given me the confidence boost that I needed and it made me realise that a lot of what I write helps others whether they are in a similar situation or not, and if I'm able to help people through writing and being honest then I'm happy.

At the moment I can't actually share the project that myself, others and Rainbow Trust have been working on but I promise I can soon, honestly I can share it much sooner than you probably think. 

Also, since taking my blog down I've deleted Facebook, I did also come off Twitter and Snapchat for a long time but recently got them back. As for Facebook, well, I'm not sure about that at the moment. It will benefit my blog but it definitely doesn't benefit me at the moment. When I feel that the time is right for me to get Facebook back I will and I'll be sure to let you know but for the moment Facebook is a big NO.

Since taking my blog offline, I've had a lot of time and it's definitely time I needed. I don't regret taking it offline because it has benefited me in so many ways. I am so grateful for everyone that was there and supported me at the beginning of Tinkerbella as well as everyone that may be reading for the first time. It truly means the world!

Thank you so much for reading

Love, Erika