After months of coping without any of their usual support from family and friends during lockdown, Eva’s mum, Kim and their family were so happy when Eva could go back to Naomi House for her little holiday, giving them much needed respite.
Naomi House mum, Kim, shared with us the challenges she and her family have faced during the last few months of lockdown and the Covid-19 pandemic, whilst caring for their medically vulnerable daughter, Eva.
5 year old Eva has the condition, Rett syndrome, which is a rare genetic disorder affecting brain development. It is a regressive condition which results in severe mental and physical disability. Eva has very complex needs and has to have 24 hour care. She lives with her mum Kim, dad Luke, 8 year old brother Taylor and 18 month old sister Maya.
"Our lockdown experience has been really challenging. We went from having family around and having a lot of support to then having none at all. Luke’s family live across the road from us and we have friends locally who could help. Eva was going to preschool, and I used to take my other daughter, Maya to a playgroup, and then all of a sudden, it just all stopped.
No activities, no appointments, nothing, it felt like no one was there for us.
"It’s been hard, trying to get used to managing on our own and doing our best to keep all three children happy. I have had to do Eva’s physio with her, anxious to make sure that I’m doing it right; helping her with her speech and language, monitoring and keeping an eye on her seizures and staying in contact with health professionals, through text messages, or video conferencing. I’ve been in touch with the consultant almost every week now because Eva’s seizures have increased and have become more severe.
"During lockdown either Luke or I would have to go out and get the shopping. About half way through lockdown, we received the letter saying that Eva should be kept away from everybody, but the whole family was shielding anyway, and that’s when we had food parcels delivered to us. That was really helpful.
"We were very worried and scared, and we were disinfecting everywhere and gelling our hands. We didn’t even allow Taylor outside. Right at the beginning, people didn’t know a lot about the virus and we were constantly watching the news for the daily updates, to see where we stood with Eva. She was so vulnerable that I felt that we had to take extra precautions. It was on our minds all the time, I was thinking, ‘I have cleaned the house from top to bottom, but have I disinfected everything properly? Have I done the car, have I done the pushchair, have I done her walker?’
"Eva had been booked into stay at Naomi House and for the first time she was going for a whole week. I booked it at the beginning of the year and we had been really looking forward to it. I had planned to take the other two children out and do things that normally we wouldn’t be able to do. But it was all stopped, and even though I understood why, it was so disappointing.
"I still had contact with Naomi House though. I had an email every week, with ideas and activities we could do with the children. Also, there were sibling groups that they were doing on Zoom. Some of the children could then still see each other and play games.
"I speak to Martina, the counsellor in the family support team, regularly, and I had regular contact with her throughout lockdown - emails or a quick phone call here and there, to let me know she was still there.
Sometimes I just need to talk to someone, and I know that I can go to her and say anything and not be judged. It is good to know that somebody is listening.
"It was really exciting when we found out that Eva was able to go back to Naomi House. I kept saying to her, Eva you’re going to go on your holiday this week! It’s her holiday and it’s her time.
She was so happy to be there, she was giggling away, straight away interacting with the nurses and carers there. We were very comfortable about leaving her and as soon as we got there, all the right checks were done. I was worried beforehand about her having to stay in her room, but all the play things were brought to her, and she was able to go outside and watch other children, which she likes to do as they make her laugh. We felt that it was all going to be very safe.
"We were then able to take our other children to the park and both of us were able to stay and play instead of one of us having to stay with Eva or worry that she wasn’t enjoying it, or that she was bored or not being interacted with. We could all just go on the play equipment together and just enjoy it.
"We knew that Eva was having a good time at Naomi House and that she was getting what she needs from it, she was getting her time and she was getting the one to one that she loves.