During the lockdown, it was like everyone was living like we were for a change. Everyone was stuck in, scared of getting ill and that’s how we are with Faith.
Naomi House mum, Nancy, tells us how she and her family have coped during the first lockdown of the Covid-19 pandemic, and what it was like when her daughter, Faith, was able to visit Naomi House again.
7 year old Faith has Dravet syndrome, which is a rare form of epilepsy. She has ataxia, learning difficulties, speech delay and mobility problems. She is also at risk of SUDEP (Sudden Unexpected Death in Epilepsy) and needs 24 hour care. She lives with mum, Nancy, dad, Martin and little sister, Rose, aged 4.
When I heard about the lockdown, at first I felt panic, I won’t lie. It was the thought of having to care for Faith, all day and all night, without any help and for a length of time we didn’t know.
“Martin is a key worker in the fire service and he came down with Covid-19 symptoms at the beginning of the lockdown. We had to banish him to the downstairs bedroom for two weeks. I would open the door a little bit and let the girls see him, otherwise, Faith would be banging on the door wanting to see him; she didn’t understand it at all.
“My friends dropped shopping round because my mum and dad, who were usually a big help with Faith, were also shielding at home.
“When Naomi House had to close, we understood why, but that was another lifeline gone. We were disappointed for Faith because she loves being there and she looks forward to going. It was her little sleepover.
“It seemed like her little routines; school, Naomi House, Grandma, everything was just different and there was no way of explaining to her why.
It’s been very difficult. As much as we love her, Faith is very demanding, not just with her disability and her condition, but also behaviourally, so it was hard with just myself there during the day and Martin out at work. It was just simply finding a way of coping and the hardest bit was not knowing how long it was going to go on for.
“We would play outside and I set up loads of games and activities. She would sit in her chair playing with her bubbles and we would move her to the sandpit and try and make sandcastles. We had a big carpet offcut that we put out and put loads of toys there. We went out for our daily exercise as much as we could.
“Naomi House phoned to check up on us and see how we were doing and the activity ideas on their Facebook page were helpful. It was nice to know that the contact was still there.
“Once Naomi House was open for respite again, they got in touch and offered Faith a stay. I told Faith and she started talking about it saying, ‘kitchen’ and ‘piano’ and ‘music’. The day we went back to Naomi House she was saying ‘Naomi’ and as we went along the driveway she was saying ‘there she is.’ She recognised the building and she was so excited getting her things out of the car.
“She was so happy to be there, she was back in her old world, she knew people and she knew what it was going to be like.
All the carers had masks on, but at a distance they took them down for Faith to see their faces so she knew who they were, and then put them back on, which was lovely.
“The care team had arranged it so that she would have special permission to go into the kitchen where she loves to see Sharon, the cook. She had a lovely afternoon with her hands in the flour, pastry making.
“When I came to collect her, she had been doing some singing and dancing and she’d had time in the kitchen, so I knew she had been happy. They had made sure she got her sleep in the morning so she had a rest before doing other things that she would get excited about. I knew she wasn’t tearing around getting too tired, which is a trigger for her seizures. That gave me peace of mind.
“On the Sunday afternoon while Faith was at Naomi House, it was so hot, so we borrowed a big paddling pool from my mum. We can’t have one when Faith is there because the cold water and heat can be a trigger for her seizures. I got in it with her little sister, Rose and I sat there in my sun hat and a drink in my hand and that was me for Sunday afternoon! We could never have done that if Faith had been with us. Every child wants to get the paddling pool out during the summer, so Rose had hours playing with her dolls and her little surfboard; she was in her element.
“That really made a difference. Something silly, something that other families take for granted we have to be so careful about. We have a little splash pool for Faith because it means that she’s not submerged in water and we have to limit it to a few minutes at a time. Excitement is a trigger for her seizures, so it’s always a big risk when we do it, but we try and do it for her. But to get the pool out and relax, and spend quality time with Rose, was just lovely.
“It was a lovely break, but we were excited to go and get Faith and it’s always nice to know what she’s been doing.
It’s like she’s got her secret life there that we learn about when we pick her up - it’s her social life, it’s her special place.