Emily’s story: “Every little moment”
When Emily was born with a severe heart condition, the doctors told family to take her home and make the most of what precious time they had together. Val thought that time would be a few days… weeks at the most. Four years later, and Emily is still smiling, playing, clapping and making friends with everyone she meets.
When time isn’t on your side
Life with a seriously ill child is not always easy. As well as her heart condition, Emily is blind and requires round-the-clock care. She is non-mobile and is fed entirely through an NG (nasogastric) tube. Val has a respite carer who comes twice a week but there’s no doubt that taking care of Emily can be exhausting.
When the coronavirus pandemic hit, Emily and Val went into lockdown. Eventually, after five months they were able to reinstate visits from the respite carer, but many of the other services they had relied upon closed their doors for much longer. Worse than that, Val was worried that Emily was missing out on the chance to make childhood memories in the short time they have together.
When you have a child with a life-limiting condition, you haven’t got time on your side.
Val
Ever since Emily was a baby, Val and her family have never lived more than six months into the future. Trying to plan beyond that is impossible as they simply don’t know what the next six days, six weeks or six months will bring. Every day is a cliff edge, knowing it could be Emily’s last. That’s why the family is so determined to make sure Emily can live to the fullest for every little moment.
The impact of Covid-19 on Val and Emily
Lockdown stole so much of Emily’s precious time. Suddenly, Val was faced with day after day, week after week, month after month not knowing when she could be free again to give Emily all the childhood experiences she wants her little girl to enjoy in her short life. The family were so afraid that the first six months of coronavirus could be Emily’s last and instead of filling it with fun and laughter, they would be trapped at home.
We want to fill her life with so much fun stuff and happiness and that was taken away from us. We would have been jeopardising her life to go out, but it still didn’t feel right not doing the things she enjoys.
Val
Lockdown meant no more outings to the park or to the zoo. It meant no visits to friends or trips away. All the things that Emily loved had to come to a stop. When a family can’t look beyond the next six months, any lost time becomes even more painful. Lockdown took away days, weeks, months of fun activities and happiness – time the family simply doesn’t have to lose.
Lifeline support from Together for Short Lives
Thankfully Emily is still here and the family are back having adventures, making memories and filling their little girl’s days with light, love and laughter.
Throughout the lockdown, Val was in touch with other carers thanks to Together for Short Lives’ social media groups. The sessions gave the family time to tell their stories, talk about the daily challenges of caring for a profoundly disabled child, and share the details that other parents and friends simply struggle to understand. From explosive “poo-namis” to profound bereavement, being part of the Together for Short Lives community meant Val didn’t have to struggle on through the isolation and grief of lockdown alone.
Making the most of every little moment
This Christmas, the family are looking forward to making festive memories. Every Christmas is so special for Val and Emily. The family never even imagined they’d spend a first Christmas together, let alone have four with their little girl. Val knows every Christmas might be Emily’s last. So she makes sure each year is as special and memorable as it can possibly be.
Emily is not fragile. She’s a tough little girl full of joy, smiles and life. She’s sassy, she’s stubborn and everyone falls in love with her.
Val
