Time for a guest column this week. I’ve been meaning for literally weeks now to write a piece about the charity I am running for, and have always seemed to come up a bit short. I wanted to do the piece justice, and highlight all the amazing work that The Children’s Heart Association do across the North West, and how they supported the brilliant Josh Fielding throughout his life, but in the end I decided that it would be a whole lot better coming from one of the people that knew him best, and had seen first hand what great work they do. So even if you’ve ignored my ramblings in the past, boring you senseless with tales of sweaty woe, please take a few minutes to read this week’s entry. And after that, it’d be real swell if you could head over to my JustGiving page and chuck a few quid their way. Because, you know, they’re awesome. And so was Josh.
So please, give it up, for Jessica Fielding, who will tell you all you need to know.
The Children’s Heart Association is an amazing organisation and it has been quite a challenge to put it all into words. Not as much of a challenge as the 26.2 miles Joe will be running though, obviously. The Association exist to provide exciting and fun activities for not only the kids growing up with a wide range of congenital heart conditions, but also for their parents and siblings too. It was only after Josh died that I realised just how much the Association did for him. Kids who are put into this position – growing up with an uncertain future, silly amounts of trips to hospitals and undergoing heart surgery – it must all be pretty terrifying for them, along with being quite isolating. I know that all Josh ever wanted to be was just like all of his ‘normal’ friends. And he was just like everybody else, in a lot of ways, but he was also pretty special too.
I often marvel at how Josh got to be so brave, but I think that this is how the Association helped him and continues to help other kids like him, by showing them that life can still be just as much fun and that you only need to look on the bright side of life to get what is most important regardless of how long you’re here for – a bloody good time. The thing that I will treasure the most from my family’s involvement with the Association were the Christmas parties that we used to attend with them, just down the road from the old Children’s Hospital. They were so much fun – a disco during which I would spin Josh & my sister round the dance floor until they were practically sick, an amazing buffet that we always went back to at least three times, followed by a trip to see the Big Man (and the legend) that is Father Christmas.
That’s the three of us in the Polaroid photograph you can see (unless Joe has changed it to a picture of a cat) and we must have carried on going until Josh was about 13. We were no longer sitting on Santa’s knee when we were that age though. Obviously.
As well as providing Josh with a lifeline in terms of socialising with other kids in the same position as he was, they gave Josh hope that he wasn’t alone in the difficulties that he faced. As Josh grew older, the Association was still able to be there for him in terms of providing the wonderful Adults with Congenital Heart Disease team at the Manchester Royal Infirmary (MRI) with support in providing better facilities for their young adult patients. The MRI have a wonderful support service for their young patients, and this is all funded by The Association. There is a text messaging service which allows the young person to stay in touch with the ACHD team, which is both easier and more informal for the ‘youth of today’. There is also a group, Hearts4Teens, which has been set up to allow the patients to meet each other – they go on outings and there is also a website which has been set up for them, which gives them access to lots of info and resources and also a forum by which they can all keep in touch.
The Association have also provided equipment for the MRI, both for clinical and entertainment purposes, the latter of which Josh definitely did make use of during his admissions to hospital. When you are a young person on a ward, you give up a lot of your personal freedom, and life becomes very different to what you are used to in the ‘outside world’. I can’t speak for all young patients, but I know that Josh didn’t really want his friends to visit him in hospital – I don’t think he ever wanted people to know what was really going on, so having access to a PSP when you are surrounded by people much older than you and with whom you don’t have much in common, and having just your Mum and Sister for company, is an absolute must. I know, because my ‘sparkling and witty conversation’ (his sarcastic words, not mine) was ignored enough times when he was playing GTA VI on it. Cheeky git.
I am so tremendously proud of Joe for doing this, not least because he probably has mental problems for putting himself through such a feat, but also because he has been kind enough to do it for Josh. When I was speaking to Josh’s Specialist Nurse about the help that The Association give to the MRI, I mentioned to her how sad it is that we will never get to see the kind of person Josh would have become and for him to have been able to offer his support to other people in the same boat as he was – because I am sure that once he had seen a bit more of life and grown up some more, he would have been able to celebrate what made him special and realise that he had a lot to offer other people like him. Linda said that, if he had felt able to be that person whilst he was still here, he would have been an inspiration to other young people like him, because they need someone to look up to who doesn’t let their heart condition get in the way of doing what they want to achieve.
And I like to think that this is what Joe is doing really – making the difference that I hope Josh could have done. I’m proud of both of my lovely boys actually; I would never be able to thank either of them enough. Anyway, enough mush from me – the bottom line is that Joe is amazing and so are the Children’s Heart Association. It would make my world if you could support them both by digging deep. Muchas gracias. Jess (Josh’s big (& as I’m sure he would say, annoying as hell) sister) xx