“We were really at breaking point so the hospice was a massive lifeline – somewhere Henry would be safe."
Henry is six and has spent most of his young life in and out of hospital. He has a number of complex health issues, including a very rare cranial disorder which means his brain has no room to grow. He’s fed through a tube, has stopped breathing on numerous occasions and needs watching constantly, day and night. Sarah, his mum, says: “We just get on with it now, but it is really stressful. He picks up infections really easily, so we can’t go anywhere. And I don’t trust anyone else to look after him. Not just that, but I wouldn’t want to put a family member through that.”
Henry’s family was referred to Forget Me Not when he was two. “We were really at breaking point so the hospice was a massive lifeline – somewhere Henry would be safe. The staff there are trained, they know how to look after him. But also, they’re like family – our kids love them and they love our kids.”
The pandemic has been hard for the family. “We had to shield ourselves totally. When we visited the hospice in August, to spend time in the garden, that was the first time we’d been out of the house in months.”
But then, Sarah’s used to having life disrupted, “we’ve had that for the last 6 years, it’s normal for us,” she says. “In fact, we’ve only managed one Christmas not in hospital.” And she’s learned not to think too far ahead, not to worry about the future but to make memories right now: “We don’t make plans. We live life for now.”