By Leicester Mercury | Posted 09 May, 2016
Mum-of-two Kirsty Adkins wanted to be open and honest with her young daughters about dying. She wrote this piece for LOROS to publish during Dying Matters Awareness Week. Sadly, Kirsty died on April 15, before getting the chance to see her words helping others. Her husband, Richard, hopes they will now do so in her memory.
The D Word: I don't want the word 'dying' to be taboo in our house. 
The way I see it, is this is happening and we have to deal with it, as a family.
I have two daughters – Katelyn and Lauren, one 10 and the other 13 – and we include them in everything. Me and my husband, Richard, have spoken about my illness. I've involved them in conversations about the funeral and we've talked about life after my funeral.
I'm 40 years old and I have graft-versus-host disease; an illness that developed after the bone marrow transplant I had following a leukaemia diagnosis rejected my body. It's searching for its own home and doesn't like being in mine. I know. It really is as rubbish as it sounds.
To bring you up to date, I was diagnosed with leukaemia in January 2011. Within months, they had found a match for me and by June I was having a bone marrow transplant. I was leukaemia-free. Then, my body started fighting against the transplant.
Now, it's gradually taking down parts of my body, layer by layer. So far, it has affected my skin, my muscles and it's beginning to get to work on my organs. I can potter around the house using a walking stick but when I go out, I have to use a wheelchair. My body is weak and I can't do even the littlest of things anymore, like dress or shower myself.
How do I feel about what's happening? I've got to the stage now where I've accepted that this can't be reversed and at the moment I'm just trying to keep it under control. The main thing for me right now is stopping it affecting my heart and lungs.
Since my initial diagnosis of leukaemia, we've done a lot of talking about the future as a family. I remember the girls asked me: "Are you going to die, Mummy?"
I said: "I could do, but we're going to do everything we can do to stop me from dying right now."
We decided we were going to be honest with them from day one; it has strengthened the trust between us and them because we're not hiding anything and they know that. I don't want to give them false hope. In my opinion, so many children are protected too much and it's amazing how much they appreciate it when you do open up. Some of the talks we have are quite light-hearted and some are quite emotional, but if we don't talk about what is happening, they could start imagining things and thinking the worst, which I don't want.
I lost my dad at 18 and I didn't get the chance to talk about these things with him and it took me a long time to deal with that. I don't want my children to feel like I did when Dad died. My girls are amazing and, because I've been honest about what is happening, I feel like although they're going through a horrible time, they're not worrying about me and what's going to happen.
We've talked about what their life is going to be like when I'm not here any more. We've planned trips away that they are going to go on with Daddy. Like Amsterdam – me and Richard went there and I've always wanted to take the girls. We've planned the trip they can have with Dad when they're both older. I want to be involved with their future and although I know I won't be physically there, it will almost be like "Mum is still with us".
We've talked weddings, proms and birthdays, and the girls have asked me to write them letters that they can open when they're older. We've even spoken about what happens if Richard finds a new partner; I've explained to them that Dad's got to have a life, too, even when Mum's gone, and that they can't shun anyone just because they're not me. I'd rather him be happy than lonely.
Of course, I've spoken about it with Richard, too. He knows I don't want his life to stop just because I'm not there. He knows I'm happy for him to find somebody else. If it happens, he needs to know I wouldn't have an issue with it.
I've even made them a 'Mummy's guide to life', which is a book full of – some serious and some silly – advice about life, like how to fold washing. It's like a scrapbook that the girls can look at when I've died.
I know, it sounds like I'm tying up all of the loose ends before I die. That's because that is exactly what I'm doing. I'm the kind of person who needs to know everything is sorted.
I need to know I've done everything I can for Richard and the girls before I go.
Kirsty's family are raising funds for LOROS in her memory. To donate, visit: www.justgiving.com/kirstyadkins
