I cried every day for three months when I found out that Carmela had muscular dystrophy. My life simply ended at that point - I kept thinking why, why us? Play
I had to give up my job as a teacher and my husband Darren had to change jobs and become a long-distance courier driver in order to make enough income to support us all. It's hard for Darren being away from Carmela for long periods. He misses her awfully - and I miss Darren.
This is not how I imagined life would be. I come across as being strong but inside I am frightened. There are so many 'what ifs' - what if she doesn't wake up tomorrow?
Carmela crawled and walked on the same day at 15 months old. Three months later, she could not climb a step without help and seemed unstable.
She got progressively weaker and lost the stability in her neck. She is unable to lift her head when lying down (and has to walk with her head slightly tilted back as it can drop forwards easily). Carmela has a 'whizzy wheelchair' but she can still walk, although she gets tired easily. She wears a head guard to protect her from knocks and falls as she is very wobbly.
The Julia's House carers are wonderful - it is so much more than just a job for them - the quality of care, the thoughtfulness and the friendships. I could not leave Carmela with anyone else.
The first time they took her riding, I walked round with them, listening to her laughing and squealing with joy and I just cried and cried - they were tears of happiness.
Visiting the hospice also has a wonderful, positive effect on her and definately makes a difference to her emotional wellbeing. Carmela just loves it there. She gets up to all sorts with the nurses and carers!
I want her to have as many experiences as possible because tomorrow she might not be here.
All this does take its toll on me as I am totally exhausted all the time. The break I get from Julia's House is helping me cope with the pace of it all.
Our Julia's House carers also come and look after Carmela at home so that Darren and I can go out - a chance for us to catch up and have some quality time together. That break is crucial - it keeps us bound together as a couple when so much of life is conspiring to keep us apart.
Darren and I have shed so many tears but then I look at her and think she's a happy little girl, she's not sad. She's just enjoying her life and that's what we need to do too.
This year will be our first ever family Christmas at home and I am so looking forward to it.
Me and Carmela will make some shortbread to leave out for Father Christmas along with a carrot and a glass of milk. I plan to take her out in her wheelchair for a walk around the neighbourhood on Christmas Eve to look at all the twinkly Christmas lights.
The first time the carers took Carmela riding I walked round with them, listening to her laughing and squealing with joy and. I just cried and cried, tears of happiness. You can’t put a price on that.