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.
But our main concern isn’t us, it’s Noah. His social life is school and Julia’s House, especially the other children and families we all meet. He can’t access the same social connectivity that other children can such as video calling friends or going out cycling to get some exercise and fresh air. So, life is really isolating for him right now, he is getting no outside stimulation which is so important and enjoyable for him. His world has shrunk hugely. Also, the advice on PPE changed again, so the nurses and carers were wearing masks and aprons when they next visited and that was so different for Noah. We know it had to be done for his safety, and if it means they can continue to visit, that’s the most important thing.
We have really appreciated the visits so much during Coronavirus and the lockdown, but we are missing the extra things that Julia’s House brings. The little things that mean so much – play therapy for Noah, the family and sibling activities and events that we usually go to, the contact with other families at the hospice and even the de-stressing massages that keep us going through tough times and help us manage. Time spent with people who know exactly what life is like for us. Those things make a huge difference.
I imagine that to others a few hours from Julia’s House every week may not seem a huge amount of time, but those few hours enable Chris and I to reconnect and just take a couple of hours to walk the dog or go for a bike ride. They mean we can spend some proper time with our other children. Time is often something that all of us take for granted, but it’s something that as a family we’re always short of. Just those few hours have made the world of difference during Coronavirus. They’re helping us get through a really challenging time.