Noah's parents Emma and Chris explain how lockdown has been for Noah, who suffers with complex epilepsy and severe learning difficulties.
We found the Coronavirus situation particularly hard over the Easter weekend as normally Noah would have been at the hospice, having such a good time. We really miss the warmth and fun. That may sound a small thing, but it actually means such a lot to Noah and all of us.
Julia’s House has always felt like a family, so that is what it feels like we’re missing. We’re missing family. Before Julia’s House, we had spent 10 years looking after Noah on our own and their support has made such a huge difference. They just have an unsaid understanding of what our lives are like, the ups and downs, worries, anxieties and pressures. We always know we are with people who know and care about us and when they arrive, it rejuvenates everyone.
We’ve had a very difficult and frightening few weeks, with Noah admitted to hospital four times in the last five weeks – the last one was really serious. His immune system is highly compromised, so we do feel worried when he is there but we can see everyone has got a really good grip on all the hygiene controls and that has been reassuring. It’s when we’re home that it is challenging.
We temporarily had to stop the Julia’s House visits as Noah has been in hospital, so we had to follow infection control procedures and had 14 days of self isolation before the nurses and carers could visit again. Being able to have continuing care for Noah throughout the crisis has been great, so it was hard for us not to have that support, especially at a time when he is in a medically vulnerable position.
We were back in a place before Julia’s House, back to self-supporting and that is made us feel that much more exhausted. We were feeling very vulnerable as parents, we’re super vigilant and taking it in turns to check on Noah during the night - when he gets ill, he goes downhill very quickly. We were tired as there was no down time. We just can’t leave Noah. All the nurses and carers have become part of the fabric of our lives, so not having them during that time was very hard.