One of our favourite memories was when we brought Lily upstairs for story time before bed with her sisters. This was something that I thought we would never get a chance to do at the beginning.

Everyday a professional HSE worker called to check on us, whether that was our outreach nurse, palliative care, Jack and Jill, social work, public health nurse, home help or our amazing GP. Without these people I personally would not have gotten through it. As Lily didn't need any nursing, they were mostly my counsellor, someone to bounce my fears and worries off, of which there were many. They helped us move through the 'mourning process' to the 'celebrating her life process'. Once the funeral service was discussed and planned, we put it aside and relished in the fact that she wanted to stay with us for as long as she possibly could.

During these good weeks we did many things with Lily, trying our best to make memories and show her how loved she was. Look at our bucket list for the 60 items she achieved. One of our special moments was to bring Lily out to my parent's house in Cloonee. This is where I grew up and where the girls go on their 'holidays'! My sisters and their other halves were there also. We all had a special dinner in Lily's honour and then my uncle and his family came up to meet her. I was anxious that nothing would happen, as we were always waiting for her apnoea alarm to go off. But she behaved brilliantly and we made lovely memories. We thankfully got to visit Cloonee twice but the 2nd time Lily was suffering with reflux and had an upsetting incident with vomit. Don't think my mother will ever get that image out of head.