I don't think about what life will be like without Daisy because I know it would be unbearable. So I don't think about it. I will deal with that when that comes along. Right now, we're just enjoying the time that we have and I think if I worry about what my life's going to look like and her brother's life's going to look like and her dad's life… if I think about that, then I wouldn't be able to enjoy the moment. I'd be worrying all of the time. So I don't. I'll deal with it on the other side. And that's the best I can do.

That's all we can do. It makes our time happier and I think if I've learned nothing else, it's living in the moment makes things so much more bearable, less anxiety inducing and just pleasant, so I don't go too far forward.

So for us, that choice that Daisy made, although it's a devastating choice and it's really hard, it was the right choice for her, and the knock on effect is that it was definitely the right choice for our family. Now the time we spend is peaceful and it's calm and it's not stressful and we haven't got that anxiety or worry about how are we going to get her here and how can we move her there? She was blind at the time and she was terrified and we'd be waiting for hours in very busy corridors, and she couldn't see what was going on but she could hear and the noise for her was deafening. And she was so frightened. She's such a little thing, a big brave thing, but a little thing. 

I look back and I think I really understand why she made that decision. I hate it, because I want her to be in my life forever. I wanted to see her get married and have children and do all the things that you expect to do with your daughter.

When Daisy first made her decision I was obviously devastated and I kept thinking, oh is this going to be our last this? Will she be here at Christmas? It's really hard and I was just running ahead all the time in my mind. Now I've kind of learned to live in the moment, I don't think too far ahead. We have each day and we live it as we live it. We don't really make any plans anymore. We just wake up and then we do our day and then we go to bed and we do the same the next day. 

Hospice at home

Di Turner is our clinical nurse specialist and when she first turned up at our house, she turned up with a doctor, and she came in and Daisy was saying ‘it's a really unfortunate name, isn't it, that you've got there Di, because I'm dying and you’re called Di!’ And it just made us all laugh. 

It was really difficult, but now I quite like having her in there. I keep the door open and I can sit and chat to her, and if I'm reading or watching some rubbish on the telly, generally it just makes her more accessible now. If we've got friends over and we're having dinner, they'll pop in and see her, and then we'll sit with the doors open so she feels that she's a part of the conversation. 

We’ve used SinglePoint service quite a few times when we first came under the hospice, Daisy was sick often and she wasn't on a syringe driver then she was having injections and medication. Ross, we love him, Ross would come out and inject her, and there was a couple of others that came out, but Ross really sticks in my head because I think he was the one that convinced Daisy that she needed to actually go into the hospice. Daisy didn't want to go into the hospice because she thought she was going in there to die and it took quite a lot for her to give in and say yes, OK, but he convinced her to go in and obviously she's home now. 

I have called SinglePoint a couple of times, it's never a faff, it's never a big deal, they just crack on and do it. Again, they do what they say they're going to do and they're always there, it doesn't matter when you phone them. They're knowledgeable, they know what they're talking about and it's just nice that you feel safe. SinglePoint just seem to know what they need to know and if they don't know, they'll toddle off and then they'll call you back. And they always call you back. So it's great. I really like it. I can make a phone call and someone will come, it's life changing.

Hospice

When Daisy first went to stay at the hospice I think I was relieved. I worried obviously because I like to be with her. I didn't like the idea of her being somewhere on her own. And I think because her vision was so poor at the time and it worried me because she couldn't see who was coming into the room. I was quite worried about that, how she would cope. But they gave her a lovely little room and people always knocked and introduced themselves, so she would know who was there. 

I think the first time she went into the hospice, she was there for maybe a week or so. The second time she was in for about 10 weeks, quite a long time. The first time I wasn't like Daisy thinking she's not coming home because I knew she would be coming home. I was happy in a way, because Ross had said what we want to do is get in front of this and the only way we can do it is to try out different things and monitor it in the hospice and then she can come home. So I was quite like, yeah, this is really good. 

There were things like I could sleep there if I wanted to, and I'd leave work at lunchtime and go and have lunch with her every day. She got along with everybody that was there. Harry in the kitchen, she really liked him and he's quite young so they'd have like, chats together. And then she had the cat and lots of dogs came to visit her and it was really nice. 

When they first put her on the syringe driver, she had a real burst of energy and her friends would come to visit and that hadn't happened for a long time because she was just sick continually so she couldn't really have conversations with her friends or catch up, so for her that was brilliant. She saw quite a lot of her friends in the hospice, and it was really nice. I was anxious, obviously, because of her sight, but I wasn't at any point thinking she's not coming home. It's like a very quiet hospital ward with individual rooms and it's lovely.

The biggest thing for me, is that fear had gone. It’s so impactful, it's just made such a difference to all of our lives. Everyone's available all of the time. It's just so different, so very, very different. Nobody, and I know that they're all busy there, but nobody makes you feel that they're too busy for you. It's an incredible setup.

I think for me when she was in the hospice, I've never felt so peaceful and certain that she's in safe hands. When we went there and I felt that we had the space to be. I wasn’t scared of leaving her there. I know that when I walked out that door, she was completely in safe hands. I had no worries whatsoever. The nurses, the whole staff team actually, are just amazing. I just feel they're so resilient as a group of people anyway, but the way they connected with Daisy, the way they spoke to Daisy, the way they give you their time. They just seem to understand what living grief is and they give you the space to manage it, but they're there if you need someone to talk to. I just think that place is golden. 

We’re not trying to fight our way through anymore. It's like we've left the raging sea and we're on a very serendipitous, lovely, stream that's bubbling away; we're on a lazy river now.

I would do anything for St Helena Hospice. They have changed my life. Completely.

This story may not be published elsewhere without express permission from St Helena Hospice.