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.