Another special moment was when we ventured out to a 1st Holy Communion. We were all made so very welcome. I was so proud showing her off and for the day, we forgot about her syndrome and her pipes and just enjoyed being new parents again.

During these 4 weeks we put all our energy into having a birthday cake every Wednesday, floor play with her sisters, photo shoots with and without pipes, trips in the car, reading her stories, kissing and hugging and loving Lily as much as we could. We planted a cherry blossom tree and a princess lily plant in her honour. Life was good. It felt as normal as we could make it. I got used to living in the moment and being house bound, which for me was an adjustment. The outside world became non-existent. Watching TV a distant pastime. 'Me' time was something I wished would never return.

The Early Intervention Team called during week 6 because she was doing so well. Mostly discussed how we were doing but informed us of their services if Lily continued to defy the odds. This, I have to admit, I didn't cope well with. I had been told from day one that Lily had days to live. I had slowly got my head around that. Now I might be looking at long term care. If that was Lily's plan then I would rise to the challenge but I knew from research that her quality of life would be very poor. I was scared for her and us. Could we cope with 24 hour care? How could I protect Lily from discomfort the bigger she got? Of course we could cope but I did panic. I had a counselling session with my outreach nurse and my worries were listened to and empathised with. I had to remind myself that I was not a bad mother. I just did not want Lily to suffer any pain in her life. My husband reassured me that Lily had a plan but she just didn't want to tell us yet. I know now that he was right. (Don't tell him I said that!)