When we are staying at Charlton Farm, Sophia is supported by the Care Team and both Laila and Olivia are looked after by the Sibling Team. Olivia in particular absolutely loves it and the whole Sibling Team is fantastic.
When we’re at home, if I take Olivia out for the day, Sophia of course has to come too and my focus still has to be on her. A family outing has to be put on pause because I’ll have to stop to give her meds or stop for milk, but when Olivia goes out with the Sibling Team, she can just be a child again. They offer a sense of normality that other people take for granted.
I come for a rest and a break, but at the same time, Sophia isn’t whisked away by the care team - she’s a part of everything we do. I enjoy activities that most people get to do every day with their children, but I just can’t because I need to look after Sophia.
At the hospice I can play, have fun and focus on Olivia and Laila, knowing a nurse is concentrating on Sophia.
Dinner at home for us is when the girls want it and I’m holding Sophia, eating with one hand because I can’t put her down. But at the hospice I get to eat with a knife and fork, which feels like a luxury! We all sit together around the table as a family. That time means such a lot to me.