William (14) and Lewis (13) from Shepton Mallet both have a condition called Congenital Hypomyelination Neuropathy and have been supported by Children’s Hospice South West’s Little Bridge House since they were referred in 2009, at first for William and then Lewis.
Mum, Zoe, and dad, Gareth, were apprehensive at first of the idea of visiting a hospice with their children, including their other 2 children Chloe (now 23) and Oliver (now 16), but their fears soon subsided when they walked through the doors of Little Bridge House.
The children absolutely loved it from the moment we arrived. At home Chloe and Oliver would usually have to go to their grandparents while we went to hospital appointments with William and then later on with Lewis but at Little Bridge House the children had our full attention and the attention of the sibling team. They also got to do lots of things that they wouldn’t necessarily normally get to do at home. They used to really look forward to coming and having that special attention from somebody else. When Chloe got older and became a teenager, she liked to be able to talk to the sibling team openly about her feelings and about her brothers’ condition.
For Lewis and William their favourite activity still is going into the Hydrotherapy pool as it’s something we can’t do at home and the sensory room is another favourite. The gardens at the hospice are great as it’s all fully accessible for wheelchairs. The boys love Music Therapy too and when they were younger the messy play room was always somewhere they wanted to get creative in.
Just being able to decide where we wanted to go out to that day and then leave within 5 minutes was such a change from our usual day to day life. Normally our life takes a lot of planning. It usually takes around 1 hour to get the boys ready and out of the house. But Little Bridge House gave us the freedom to be spontaneous. It also gave us the opportunity to catch up on much-needed shopping we needed like school uniform or Christmas shopping together as usually one of us has to stay at home to care for the boys. So going to Little Bridge House was the only time Gareth and I would actually be able to go out of the house together to go shopping. We always took the opportunity to buy some new clothes during our stays as that’s the only time we would be able to do it.
We have had the same contact on the Care Team for many years now which is nice as when you ring it’s not at all awkward as you have got to know them so well. They ring us regularly to check in with us and see how we are. There is never any pressure from the Care Team to keep in touch, they are just there if we need them.
Chloe really enjoyed the siblings weekends that the hospice organises and as Oliver grew older he used the hospice stays as a chance to just spend time with us or do some things on his own. The Care Team were there if they needed to talk but there was no pressure to join in with anything if they didn’t want to.
We live in Shepton Mallet in Somerset and when we were first referred to Children’s Hospice South West the nearest hospice to us, Charlton Farm, hadn’t opened yet so we went to Little Bridge House. Gareth had also lived in Barnstaple when he was younger so there was that familiarity with it. And although we could have moved to Charlton Farm once it had opened, we chose to stay with Little Bridge House for the time being.
As time has gone on we are using our stays at Little Bridge House in different ways. In the early days it was a place where we could spend time with Chloe and Oliver and with the boys doing fun activities. As the children got older they wanted to do their own thing.
In 2017 we went through a difficult time with William and started to have those serious discussions with the Care Team about his end of life care. It was very overwhelming as you know why you are going to a hospice with your child but there’s almost that invisible veil there, you are there with other families being supported, but there is the other side of the hospice where children are there for end of life care. When we thought that we were in that situation we confronted our feelings and talked about it with the Care Team and it took that scariness away. It didn’t take away the feelings about it, but the fact that we had a bit more understanding and we could plan things for the future really helped.
The Care Team allowed us to ask about anything and everything that we wanted to know. They explained all the things you want to know the answers to but never want to ask the questions. It’s more like talking to a friend than a specialist in that field. When the time comes and the boys die we want to go to Little Bridge House as they have been such a big part of our lives. We know everybody there and it’s such an important network of support for us as a family."