When we first started this project, I’m not sure any of us really knew what to expect or where this would take us. I had interpreted the project as simply taking photos; documenting our life and experiences at The Treehouse for people to see. I thought I would be taught how to shoot the perfect picture and finally get to grips with my DSLR in a way I’ve not had time to since having Freddie.
Once we started to meeting for sessions and talked things through it took me somewhere else. I realised I had to dig deeper and look further than I first thought. I think we all had the same realisation. It wasn’t about the perfect photo in the perfect light. It wasn’t going to be that technical. It was about content and emotion, it was going to be a process; a journey and it was going to take longer than we all first thought.
In order to do this I had to revisit my own introduction to The Treehouse and how the word ‘hospice’ made me feel compared to how I feel about it now, two and a half years later. Then it became a combination of those feelings I would produce into images.
As most of you know, Freddie was taken ill at eight months old and within days we received a life-limiting diagnosis for him. We understood what the term life-limiting meant, we knew we weren’t going to see our son grow up and do the things other people’s children would do. We even knew the average life expectancy for his condition. However, when one of his nurses first mentioned the local children’s hospice to me my heart froze. I honestly felt that, by contacting the hospice, it was like I was okay with our situation and I wasn’t. I didn’t want him to die and taking him to a hospice meant he would. I almost felt like it would speed up the process which sounds ridiculous to say now.
In all honestly, I think like most people, I associated the word hospice with death which meant suffering and felt clinical, depressing and lonely. When we received Freddie’s diagnosis, we decided to live life to it’s fullest, enjoy ourselves and laugh. My view about hospices simply didn’t seem to fit in with our ethos and how we were planning on doing things.
It wasn’t until around six months later we decided we would like to meet families like ours, people who lived like us and faced the same fears we did. I knew the place we were likely to find that was at The Treehouse so I took the plunge and made the phone call. I was shaking when I phoned and I cried when they called back after panel discussed our situation and accepted Freddie. To be fair, I’ve cried a lot at that place and on the phone to someone there in the last couple of years. I guess because it’s comfortable for me to do so. I don’t cry too often truth be told. Well, not in regards to our situation anyway.
Anyway, it didn’t take me long to realise my initial thoughts were wrong. The hospice was far from lonely or depressing and it certainly didn’t seem clinical. The families we met were just like us and their children were happy. Just like Freddie. Despite facing various challenges, they were all still smiling and despite having various limitations everything was accessible and there was something for everyone. There was laughter and always something fun going on. The most striking thing was that we were normal there, and it immediately felt like home.
For me trying to capture all of that in photos was extremely difficult. I didn’t know where to start so I did it a bit differently. We had been provided with a Lumix point and shoot camera on our first session and I spent weeks taking photos of everything and anything. On top of that I looked through photos I already had, which meant something to me. Then everybody received a sheets with miniature copies of their photos on. That’s when I sat down in a pub one day and started writing, then looking through photos and making notes. Ultimately that’s how I picked the photos I ended up using. Which was completely different to how I thought the process would be.
For me the biggest thing I got out of this project was meeting the incredible women I worked on it with. We talked a lot. We shared our stories, we asked questions about each others children/families, we laughed and we cried. We bonded. They let me see our children’s hospice through their eyes. Our stories are all different, which meant I was still learning about the word hospice; who uses them and why. This project also allowed bereaved and non-bereaved parents to mix. Something that doesn’t happen often so I’m told (there should be more of that by the way). It was a completely therapeutic process that we all shared together and if I hadn’t made that phone call in January 2017 I wouldn’t have been a part of it.
For all of us the hospice has had a hugely positive impact on our lives. Whether that’s therapies, having a helping had, sibling support or having a shoulder to cry on. Even if it’s the worst possible scenario of where your child gains their Angel wings, or is taken shortly afterwards. There is so much love, respect and compassion. That is positive. That is everything. Those are things the outside world don’t always show families like mine and that’s why the hospice is so important. That’s why it’s my family’s safe place. We find comfort, security and so much there.
Whether the results of this project will achieve much in breaking down the barriers or destroying the stigma around the word hospice I’m not sure but, regardless, I’m so proud of us. Even if there was no public display, no media and zero attention I would still be incredibly proud of us because what we achieved was utterly amazing and we did it together.
