Lily’s Story

Told by dad Stuart…

Lily was born on 5^th January, 2001.  A beautiful 6lb baby girl. I was a very proud dad.

As a newborn, Lily fell ill with bacterial meningitis and afterwards suffered from hydrocephalus, which is where the baby’s head swells up to huge proportions – often an after-effect of a previous illness. She needed an emergency operation to put a drain called a shunt in her brain and over the years her health problems continued.

Lily was a very dependent child but was always happy and enjoyed the company of her brothers and sisters. She went to a wonderful special school and made lots of friends. She thrived despite her problems.

However, Lily’s health took a turn for the worse when she picked up a serious infection in her brain at the age of 15. We were rushed to hospital and stayed there for 11 months. Lily stabilised but she wasn’t her old self. She began to have serious stomach and bowel problems. The antibiotics she had been on stopped working and were making her ill.

The end came rather suddenly for me because I still believed that she was going to pull through. But, in a day, she slipped away from us. I remember vividly the very last time she opened her eyes and looked at me and then closed them. It still breaks my heart. We lost Lily on the 7^th June, 2017.

That’s when Derian House really kicked in. We’d been offered respite, but I hadn’t been able to step over the threshold. I imagined that a hospice meant dying and I was not prepared to considered that Lily needed such care.

Derian House put an arm round us at our hardest time. They made all our meals. They talked to our other kids to help them through their loss. They helped us make funeral arrangements – which I can assure you is off-the-scale difficult to do for your child. 

The first few weeks were a total blur. In fact, the first 365 days were. I couldn’t think straight or cope and I found myself in a very dark place.

I realised I was a member of a terrible club when a friend of mine burst into tears and told me about his baby daughter who had died 40 years ago. He said it didn’t get any better, it just got less frequent that he felt so bad. I would come to realise that is true. But things improved thanks to help from my family and the kind people at Derian.

Unless you have the misfortune to use the services at Derian you don’t realise the impact that Derian House has in letting parents gently get used to the thing that has happened. I feel really sad for parents who don’t get the option to say goodbye to their child in the environment we did. I vividly remember one of her sisters sitting in the Sunflower Room with Lily and putting jewellery on her after she died. It was heart-breaking.

Being a disabled child’s parents is special and important and keeps you really busy every day.  Suddenly it all ended in a single day. Without Derian we would have been lost. We would have walked out of the door and been totally left to our own thoughts and feelings.

We got regular phone calls from the family support team at Derian and they realised we needed more help than I had admitted. They invited us to a family group for families who had also had to join our terrible club. We all talked and cried at the family sessions together and this really helped us through the darkness. We made new friends that were from all walks of life but in exactly the same place as us and they helped us through it as hopefully we helped them.

The feelings probably won’t ever go, but what I can say is that Derian has made our life more bearable and made Lily’s last couple of weeks as much fun as possible. She passed away in a kind and beautiful place.