“You feel an expectation that it’s been such a long time that you shouldn’t feel as upset, but you do. It comes in waves. You can have long periods of time when you don’t feel quite so low and then it just hits you in the middle of nowhere.”

“It’s so hard to talk about it, but that’s why you need to tell the reality of it. It’s so unfair. For me it was always about Sebastian not suffering.”

“Since Thomas died we have carried on doing what we have always done, being friends, talking about him and remembering the things we did. He’s talked about a lot, you don’t forget him.”

“We had him, we cuddled him, we loved him, we spent all of those days with him but why is that all we’re allowed? Why is he no longer here, why is there not enough knowledge around this terrible disease?”

“Telling people that Ryan died can be a conversation stopper. I find that when someone asks how many children I have and I say 5 but 1 of them has passed away, they don’t really know how to respond, so that stops the conversation.”

“From the moment she was born, I had hope every day. Every day from when she was born, I used to kiss her goodnight and say to her every night, ‘keep fighting for mummy, mummy needs you.”

“Life goes on afterwards but in a very different way. Grief is always there - it doesn’t go away. Some days are fine, you can get through them, but there are very bad days and you have to accept that’s part of your life. It’s the price you pay for having loved them and so I’d rather have that grief than have never had the love.”