Messages to parents
Only that it's a tough road to go down, it's very tough but there can be days of great pain but there can be days of great joy and the joyous ones will always make you forget about the bad days. I tend to, of the horrible things that have happened to me, they're in the back of my memory banks and every now and then and I think about them, I can go into floods of tears so I try and keep them stored back here all the time. Never goes away but it's always there because that's what makes you the person that you are. But always concentrate on the positive and not the negative. You know on the really, really bad days just think about, as Jessica said in hers, it does get better and there are worse people out there than you. Going back one example – Jessica had to spend a night on a cancer ward - treatment that they were giving to her - not that she had cancer but it was part of the cancer treatment and you spend a night on there and that really does open your eyes because I was lucky in the fact that I was taking my child home the following day. There was parents in there that weren't taking their kids home and that's heart-breaking but that then gives you the strength to move onto your next days because you've always got that thought in your head that there's always somebody worse off. You know you think your life is bad but somebody else's life, somebody just round the corner from you or in the next bed to you, theirs is even worse and it's sort of like it makes you feel a bit lighter and makes you, just prepares you then for the days that are coming. So it's a horrible, horrible disease but it does have its, I can't say good things, but there is light at the end of the tunnel. There's a lot of light at the end of tunnel having got to, Jessica now to nearly twenty one, I could picture this many years ago but now to have actually got there and seen the woman that she's turned into now, it's a joy.
Well it’s, you know as I said before it’s a tremendous shock, its life changing like any illness, long term illness. But treated with strategy it’s hard to do, try and look possibly dispassionately as if someone else would be looking in on your case, and try and work out you know what you’re entitled to, and what, ‘cos sometimes you feel guilty asking for something because it’s your role as a parent, that’s what you should be doing as a parent anyway. But wait a minute, you’re not getting it for yourself, you’re not beavering it away into a stash to go off to Trinidad on a holiday. You know if she’s entitled to disability then you get disability because at the end of the day if you don’t ask for something and you don’t get it in the right, in the name of your child then you will only make it difficult later on in life I think. That’s my personal view. So you are the champion of your child. Do it for your child and but always keep an eye on your own well-being.
I mean of course I didn't want to see him in as much pain as what he went through at the start but I don't think I would have changed it. I think that we were quite, what's the word? We kept, not demanding but we were very, we knew there was something wrong and you just have to keep going, keep going and not sort of let it lie. We, we just knew, there's something wrong, we have to find, we just have to find what it is and we were determined to and we did. So…we were never in denial. I know some people probably think, 'Oh no it's not that, it's nothing.' We knew we were dealing with something a bit more serious than just a pulled muscle and we were just very determined really and spoke up and you know made it really clear how we felt and how we wanted to move on and made that clear with the doctors as well.
I would say that you do have to really just get on with it and not sort of think and harp on it because we've always just moved forward; we don't move backwards, we just carry on. And if we do get a flare up we'll deal with it. I think, I never expected that Bradley would be the way he is actually, I thought, you know, he's going to be limping for ever because you just do but I just think the methotrexate, it just controls it and the way I see it – we will, well the nurses at the hospital and us, we monitor. We know exactly what's going on in Bradley's body. Some parents haven't got a clue what's going in their children's bodies but I know what's going on with Bradley. I'm very on the ball when it comes to treatment, keeping his appointments, all the paperwork; I keep everything completely in order. I know every appointment date and you've just got to be positive, there's no point in, in really harping on it because you want to make it as easy for the child. You don't want to sit and talk about it all the time and talk about it with other people all the time. He just needs to be normal and I mean his friends all know the condition that he has and it makes absolutely no difference. They don't treat him any differently, they don't see him any differently and that's all that I want. I just want him to be, he's Bradley, that's it.
Last reviewed November 2018.