“It will always be the happy place where she has created priceless memories.”
Jessica’s mum Alison explains why Claire House will always be a happy place for her family…
Mention the word ‘hospice’ and most people gasp and express their sincere sympathies.
That’s certainly the reaction I get when I tell other mums our daughter Jessica is back in Claire House.
There is a misconception a children’s hospice is a miserable place where parents say goodbye to their dying child. And yes, quite possibly, that devastating day will come for our family, but for now, Claire House is a happy place, full of joy and love.
That’s why it suits our little social butterfly.
Jessica has a unique, chromosome abnormality and was diagnosed with Beckwith-Wiedemann syndrome when she was eight months old.
However, despite undergoing more than 50 procedures including two major bowel operations and having so much to deal with, Jessica is full of fun and very mischievous.
Cuddles are her favourite thing. She loves walking around the Wirral hospice, making new friends and holding hands with people, especially the male nurses. Imagine her excitement when Wayne Rooney visited and had a kick about with her brother!
Our cheeky 15-year-old also loves diving in a ball pool, playing in the music room and doing arts and crafts during her stays. Most recently she loved going on a day out to Chester Zoo.
But for me and my husband Mark, Claire House offers us a break. Not a break from Jessica, she is amazing, but she comes with a lot of care. So, the respite days mean we can spend some quality time with our two other children.
Without Claire House, we wouldn’t be able to enjoy ‘normal’ things like taking the kids to the cinema.
For our eldest daughter Olivia, 17, Claire House means a weekend in Colomendy or a get together with pizza at Claire House Liverpool with the friends she has made through sibling support.
While our son Joe, 12, got a rare trip to Legoland with his mum and dad. We don’t go on holiday or normally do things like that, so those few days meant the world to him.
Jessica can’t digest food, she is fed intravenously through her heart, so she doesn’t like to go to restaurants. So, we have a rule when we check Jessica into Claire House, the rest of us eat out – it’s not as a family because Jessica isn’t with us, but this is how our family must do things.
Thanks to Claire House, Mark and I even got away to the Lake District – our first night away in almost 18 years of married life.
It was wonderful to know Jessica was somewhere safe, having fun and was well looked after.
If we didn’t have support from Claire House, I could never take a step back from attending to her medical needs and just enjoy those cuddles.
Of course, as a mum to a disabled child with such a complex life-limiting condition, it breaks my heart we don’t know what the future holds for Jessica.
But it is comforting to know if we have to say goodbye, the team at Claire House will be there to support us.
For now, it is somewhere Jessica can enjoy her days to the fullest. And it will always be the happy place where she created priceless memories.