For an entire year, my eight-year-old daughter and I have lived in one room.
It is the last room at the end of the ward. It consists of two beds, one wardrobe and a tiny bathroom. It has two windows – one that looks out on the ward, and another that looks onto the hospital opposite.
Jessica has a very rare life-threatening condition, ectodermal dysplasia. Her immune system doesn’t work as it should, which means a simple cold, let alone coronavirus, could be fatal.
We’ve been living under effectively strict lockdown conditions for the last two years at Great Ormond Street Hospital. But in February 2020, Covid shrunk our world even further: we became confined to one room where we eat, drink and sleep. Jessica hasn’t been able to leave the room at any point – doctors say they think she is the second longest ever stay at GOSH.
I am the only person with parental responsibility for Jessica so I haven’t had any choice. I am the only person who can make medical decisions for her, and Covid changed the rules overnight so we weren’t allowed to change carers due to infection risk.
But sadly, Jessica’s condition isn’t new to me. My husband Rory, Jessica’s dad, had the same condition, and died in December 2018 – six weeks after Jessica was first admitted to hospital. As a family we haven’t been able to come to terms with our loss while Jessica remains so unwell.
Jessica had no idea how poorly her dad was. When I knew he was dying my mum came to the hospital to be with Jessica and I went to be with Rory. I stayed with him for four days until he died at 4.30am. At 11am I was back at Jessica’s bedside. None of us have been able to process it. I feel like I’ve been living in a bubble with my focus being on getting Jessica better to come home.
Jessica and her brother Alfie haven’t seen each other during the past year. Alfie has moved in with my parents while I live at the hospital. He doesn’t always understand that I need to be with Jessica and often asks why I can’t spend more time at home. I desperately miss him – talking on the phone just isn’t the same.
Loneliness has become my normal. When we were first admitted to hospital people would text and call to see how things were; now we have been here for so long people don’t bother anymore.
In the evenings when Jessica sleeps, I used to go to the parents’ room and talk with other parents, but Covid stopped that. Previously when Jessica was having a bad day or things were getting too much, I’d get support from other parents who understand what you’re going through. We lean on each other, offer to get food or just be there to listen.
“When we were first admitted to hospital people would text and call to see how things were; now we have been here for so long people don’t bother anymore.”
Living together in one room, I can’t take a breather for five minutes when it all gets too much – or when Jessica’s had enough of me. There is nowhere for me to go, so instead I hide in the bathroom.
Thankfully, we do have some support to help us cope. At the hospital, Jessica and I see a psychologist once a week – and incredible nurses can tell when I’m having a bad day, so they’ll come and occupy Jessica so I can have a little time to myself.
It’s Alfie I worry about most though. Being separated from him is agony. I have missed two years of Alfie growing up that I will never get back. When we were initially transferred to hospital I had no idea it would be so serious. I thought we’d be home with Alfie in a matter of weeks but Jessica had to be my priority.
He has some brilliant support from Rainbow Trust Children’s Charity, which supports families with a seriously ill child and gives Alfie the one-to-one time he needs. Our family support worker, Vilja, supports him emotionally and practically, helping him try to come to terms with his dad’s death, and organises sibling groups where he can meet other young people facing similar situations, have fun, and just be a normal ten-year-old boy.
Living through this immensely challenging time has taught me a lot. I’ve learned to accept help when it’s offered, and I’m no longer afraid to ask for it. In the early days I was told Jessica didn’t meet the criteria to enable me to get help, so I stopped asking and just got on with it on my own. I have figured out how to keep a routine too. A structure helps the day to pass quicker and it means that no matter how mundane they may be, spreading activities throughout the day has helped me get through.
Most importantly, I’ve learned to make memories. While we’ve been living in hospital, Jessica has grown up so much. She lost her first tooth in hospital and has developed a real sense of humour and teases the nurses. She’s also designed a card which is now on sale. Rory’s death showed me you never know what’s going to happen. In November we nearly lost Jessica and I was told to prepare for the worst, yet only the week before she had been well.
I dream of being able to take Jessica home and being with Alfie again. I know it will happen one day, and that things will get better – once Jessica can get over her current infection, there is hope that she will be able to have a bone marrow transplant to make her immune system stronger. It’s our one hope to give her a chance of a near normal life – and prevent her from facing what Rory had to go through.
I do often look at Jessica and think: how long do I have left with you? Will I see you grow up, get married and have children? There are so many uncertainties that we don’t know the answers to. But the one thing I instinctively do know is that I just have to keep going. I have no choice.
Things will get better, but until then I just have to live one hour, one day, one week at a time inside these four walls.
For more information about Rainbow Trust, visit RainbowTrust.org.uk
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