Because it is, how I look at it. I, for me to survive that’s how I look at it. I refused to accept the new [son’s name] and after a while I realised it, oh why am I, I did some soul searching myself and I realised that you’ve got to respect this body, this person who, who, out of all hes been through, hes turning out he smiles the same, he remembers things from the past. Hes not so much good with short-term memory, but you mention, like his favourite food or a favourite time, or an animal even, the cats or you know the dogs we used to have, or his favourite colour or a friend in the past I bumped into. Oh, I bumped into so and so, or, you know like, you know his eyes just perk up and he does turn to look to see if they’re there.

And to me, yeah I can’t, this is not My old [son] is gone, but his personality’s there but it’s not. The image I have like now, I sit, I still see him running around laughing and saying, Yeah, whatever Mum and going in his room, and how many clothes, and I’m saying, How many changes of clothes every day. You know, You only wore that for half an hour yesterday. Oh, I can’t wear that so you’re constantly washing, the machines on and you’re thinking of all these things and I remember him like that and I like to remember him. But when I go and see him as he is now, I have a sense of pride, that I lost. I didn’t want to find this new [son], I didn’t want to be part of his life. I find this sorry, I’m shaking. But it’s such a it’s taken me seven years, so don’t expect it to happen overnight.

But to accept him as he is and to get that pride again, that I’m proud, I’m so proud. I can, I am so proud that he has proven the NHS wrong, he has survived. He, against all odds, this child deserves a – you know, he should’ve been in the army – award.

I will achieve something that he would love so much is to eat again. To taste food, to taste tastes, to have because I buy special I carry it in my bag and it’s usually mint, no, he likes mint, hes always loved mint, but it’ll be cherries, you know he doesn’t like strawberries, not to taste, but hell eat strawberries, hes a funny guy. I mean hes still not, hes still the same thing so, and as soon as you put something tasty on his [lips] like, hes licking his lips.

So in my heart I’m not, I’m not giving up on that. I don’t care whether I’m going to fight for that, even if I have to raise money and get specialist care for him to have it. He will swallow, one day, that’s my achievement now he will be, he does swallow sorry, but he will eat, he will taste food. The ability, whether it’s mushed up into baby food that he will be able to enjoy. But he also, he loves food, I’m a cook, he had, you know he was always his food was always one of his passions and I’m not going to give up on that one. They keep saying, alright speech wise and that, but you don’t need speech when you’ve got telepathy with your son, you don’t need words, you don’t need anything. You just look at their face, they say your eyes are the mirror of your soul and I can look at my son’s eyes and I always know what hes a bad day, a good day, a confusing day, or like, or anything. I just look at his eyes, he talks to me.

But the one pleasure I want to get back to him, he might not have a lot at the moment, he doesn’t have anything, but just the ability to taste food. Just simple things whether it, like tomato soup, something that’s so, that he can, because he smells the food, his mouth goes when the, you know, that’s why they hide him in a room, they close the curtains, they leave him in a room, because as soon as you, like when I eat mint, because I smoke, obviously I always donate mint. He can, he knows I’ve eaten, you know I always say, Ah because he used to be a smoker, I say, You’re so lucky, you’ve given up so quickly. You know I make a joke of everything, I dance in front of him, I sing in front of him, I can’t be miserable in front of him and that’s why I’ve always advised if you’re not in the mood, do not go and see, because they sense it. And they are so innocent, it’s like they think they’ve done something wrong.

It’s not their fault, it’s your so I never go when I’m not in a I cannot be me. I’d rather sacrifice maybe a week not going, because I don’t have, I have stuff sometimes and when I’m ready he knows I’ve been and that’s all it takes.

And I did that once when I was not myself and he was so sad and I thought I’m never going to do this again. He sensed, because he just looked in my eyes, I always, eye contact and he doesn’t recognise me because when he, I’ll not say he died, but when he went away from me I never wore glasses so hes fascinated every time I have to get my reading glasses out and he likes looks at me. And I’m trying to get him to play peek-a-boo. Hes getting there, but he, I’ve got him now to kiss me, I always say, Come on, pout your lip and he pouts his lip and you can hear that [kiss sound] that’s an achievement, little achievements. It’s, but I’m not giving up from the, whether it’s just tomato soup, anything, he will taste.

When it happens to your especially your children you know, your children aren’t supposed to die before you. And, all you want, all you want is for them to stay alive. You know, you sort of listen to a lot of things and you’ve been warned and even sort of advised, they do it very delicately, they could switch the machine off. But you don’t – you just don’t – even despite that conversation I had with him, but then I had his parents, you know, the other side of the family would not have done that. They’ve always been against that. And I didn’t want it either. I mean, no one you can understand. You see them in pain and you see them virtually dead, you know, morgue state, you know, cold to touch, no movement, nothing. And bells keep going and you’re kicked out, being kicked out all the time [crying] and watching his heartbeat going mental. You know, all these monitors I became really good at learning them. And you don’t think at the time. All you want is, I don’t want him to die. But if I had – In hindsight I’d be honest, I would, I would have let him go.

I mean, you were touching a dead body. He went blue, it was like seeing a dead body. It was these blankets over him and, and – that’s the stage, I think, then, if they couldn’t kept him alive and they had to freeze him, they should have said they shouldn’t have done that. They should have just let him, and then he would have died of a heart attack. That’s what – He would finally have died of a heart attack because his – I mean, and it would have been so much easier in the long run. I mean, of course, then you want him to live; but boy, if I could change that time. This is like this is I call it it’s not punishment because but it’s changed though, it’s changed me. I was a successful woman; it’s changed a lot of things. My children, it’s the effect it’s had on the whole everyone including, you know, the [name] side. It’s devastating, absolutely devastating. And his friends. We could have all, you know – Let’s get – At the time I would have been yes but I’m still heartbroken. So this is, like, eight years of suffering [crying]. It’s now going to be the ninth year next April.

And I just want to remember him as he was, not this thing [crying]. I’m sorry. But this thing he became and I wanted to remember him laughing, joking, running and walking. Now, when he dies, theres going to be two sides of [son’s name], isn’t there? You’re not you can’t still bury the old [son’s name] because hes supposed to be in this body that you—and the worse thing is he remembers.

I haven’t buried him yet, hes not buried, hes still alive in my head. The day I bury this body, this new [son’s name] body, that’s the day I bury, I realise I, although in my head I say, [son’s name] is dead, hes not dead his body’s still here. That’s the day then I will have to amalgamate the two together. But at the moment, the only way I can survive is, don’t forget, never forget.

For us to have gone through all that but if I’d known now – even with what hes doing now – (you haven’t seen pictures of him), I wish I’d turned that I wish hed died. Because hes got no dignity, theres no dignity, they take over, they decide what to do with him and they then, the money runs out and that’s it, then they don’t want to spend any more, and that’s exactly where [son] is now. And if you don’t keep pushing and pushing and pushing like this, the speech therapist is doing what they can best. They keep changing it, one minute do this, for yes’, do that for no’s. You know. I don’t need that anymore. I just look in his eyes, he talks to me, hell raise his eyebrows when it’s a yes and if hes angry hell, he just knits his eyebrow. Hes so in a way you know, you’ve learnt, because you’ve had to, I’ve lived with you’ve had to learn this new that’s why I call him my new [son’s name].

But if you want the honest answer, and I don’t care, I don’t care if people condemn me for saying this, I wish hed died when he was seventeen. Because it’s not because I didn’t love him, but because of the uphill struggle hes had to fight and were still fighting and the pain that’s caused, not, not just the immediate family, but his friends. They can’t even come to see him anymore. Because they’ve got new lives, they’re married, they’ve got kids.

All I’m saying is please don’t feel guilty about it because you need that time out. You need time out because you’re fighting between, I’m fighting between, the [son] that I want to remember and the [son] that I see now. And I still remember him [sobs] but not as much, not as much. I see [son] and I remember the I don’t want to remember him as he is now. I want to remember him as he was. And they took that away from me.