Rosemary and Paul are grandparents to Cameron, nine, who is cared for by Julia’s House. They have been married for 18 years and have 12 grandchildren. When they heard the worrying news that their daughter Donna’s unborn baby had complications and that they didn’t know whether the baby would survive or need special care when born, they were as anxious as she was, and their lives changed completely.
“I don’t think people realise how much a poorly child affects not just the immediate family, but the wider family as well.” says Rosemary.
“We all want to protect our children. Donna and her husband Barry were going through an awful time – Cameron was so poorly and it was very traumatic for her, but some things you can’t make better. I thought I can’t protect you from this – but I can do it with you.”
For two years Rosemary didn’t see much of her husband, Paul, as she regularly travelled the 107 miles from Hertfordshire to help her daughter. Cameron had a condition that effects 1 in 8000 boys called Posterior Urethral Valves which had led to many complications including Kidney failure, fluid on the lungs and brain, and dislocated hips to name only a few.
“The first few years were so traumatic - they were continually in and out of hospital and I had to be there to help look after Donna and Barry’s other children – the two girls. I would stay with Donna during the week and Paul would come down for weekends to see us. We’d sometimes travel back together, but often Paul would have to travel back alone for his working week, when I needed to stay. That was really hard for us.
“If the Julia’s House Nurse wasn’t there to help, I honestly don’t know what we would have done. Nurse Linda is around my age – she’d come to Donna’s home and was like the Nana I was leaving with them. She would say “don’t worry – it will be fine” and it made it so much easier for me to leave when there was never a good time to leave.”
Eventually Rosemary and Paul decided to move nearer to Donna and the family. “We moved house so that we could help Donna during the busy day but then go home and spend the evening together.
“At the end of the day if there is a problem, it’s me that tries to keep Donna from falling to pieces and then Paul has to help me from falling to pieces, because we know we can’t! We have to continue to be the people that the family leans on and that’s hard to do sometimes.
“This is why Julia’s House is amazing because they have seen the need to support the wider family – not just the grandparents, but friends and neighbours too. There is quite a mixture at the ‘Greatmates’ meetings they organise at the hospice, and numbers are increasing.
“We soon realised how valuable the get-togethers were” says Rosemary. “Lots of friends and other family members have been very supportive – but nobody quite understands like someone who has been through something similar. It’s really lovely to meet others and go out together.
“We don’t just talk about our Grandchildren, we talk about all sorts of things. We have themed events, crafts, fish and chips evenings, BBQs and we get to know each other and strike up proper friendships.
“We feel like we’ve been taken into the fold which is such a lovely feeling. Everyone wants to feel like they belong. It’s an extension of our family really, because we have the support network that we all look to.
“Before you have a child with a problem you think it’s going to be sad and miserable, but it’s not. Cameron loves going to Julia’s House and so do the siblings. Donna has made good friendships with other mums too. It’s just such a happy place, it’s homely and a lovely place to be.
Julia’s House are a lifeline and continue to be there. It’s a family and it’s amazing