As well as seeing to the medical needs of the children we look after, and giving them and their families much needed respite, Julia’s House is also a place for them to meet other children dealing with similar circumstances. So when we care for children who are of a similar age and have similar interests, we do everything we can to facilitate a friendship between them.
Recently, we hosted a sleepover for three of our children, Paddy, Darcie and Kaitlynne, who we hoped would get on well together. Not only had they never met before, it was the first time that the girls had spent a night away from home, so this was a big deal for all of them.
We set up one of the bedrooms in the hospice with two mattresses on the floor, and added disco lights, glowsticks, spinning chairs, and plenty of snacks. We put on a spa evening for the girls, and all the children watched Disney’s Encanto on the big screen in their pyjamas. We kind of left them to it, so they could create a bond naturally, and they ended up getting on like a house on fire!
They were joking, singing, dancing and playing together, but also having conversations about their conditions. Darcie has a tracheostomy tube in her throat, and is extremely anxious about anyone going near it. She gets very distressed whenever we need to touch it, however when Kaitlynne asked Darcie why her voice was funny she simply said, “It’s because of this tube, here – feel it”, and allowed Kaitlynne to put her hand over it whilst she spoke. Our jaws dropped, this was such a huge step for Darcie, and all it took was a friend.
Kaitlynne then described what happens during her seizures to Darcie, and both told the other at what point they would need to call one of the carers for each other. They then moved seamlessly back to dancing and singing again, they were so accepting of each other.
All three children were so excited to be at the hospice and to be with someone that understood them that they didn’t end up falling asleep until 1.30am and we think that was only out of sheer exhaustion! At around 5am we heard a little voice saying ‘Darcie, where are you?’ We popped our heads round the door and Darcie had fallen asleep with her head on the mattress and the rest of her body on the floor. Kaitlynne had fallen asleep with her hand stretched out onto Darcie’s mattress, reaching for her. A little later we heard stirring, and looked in to see Kaitlynne had moved over next to Darcie and they were both asleep hugging one another. It was amazing to see the bond that had formed.
Since the sleepover, the girls have been talking a lot online through a video game and they requested another session together – this time at the beach!
We helped to facilitate a community sit for the two families at the beach in Weymouth, and it was such a special day. Sand can be dangerous for children with tracheostomies, so it was important to take care. With us there, the parents could relax and enjoy their time with the children while we supported the girls' individual needs.
Together with the girls’ mums and siblings, we said hello to the donkeys, they ate ice-creams and we paddled in the sea. We all got soaking wet!
The families have stayed in touch since, which is really wonderful. And we’re now planning more hospice sessions soon when the girls can be together again. We’re thinking pizza in pyjamas for them next time!
It has been really special and emotional to see Kaitlynne and Darcie’s friendship develop. They don’t get to socialise like other children their age because of their complex conditions, so the fact we can facilitate time to play together here at Julia’s House means so much.
