What it's like to be a Sibling Worker

"I love hanging out with these remarkable young people. It's a chance for me to be big sister"

in normal times, sibling events can be quite a mixed bag, one minute we’re all laughing while blowing up water balloons, the next minute I’m talking to a child whose brother has recently died.

Having a brother or sister with a life-limiting condition means these siblings have to see and deal with a lot of things that isn’t normal everyday stuff for children of that age. It’s easy for them to feel overlooked, especially when their priorities may fall further down the list than those of their sick sibling – that’s why this group was created.

We usually run events throughout the year from creative craft days to water sports weekends; with siblings being able to choose however few or many they want to attend. Whatever the activity, the focus is solely on them and making sure they have fun, building relationships and forgetting about the worries of home.

My job is very hands on, if I’m not on a trip then I’m organising one. It’s always wonderful to see how excited the children can get beforehand, even just filling in the paperwork! They get very enthusiastic about the residential trips to Wales and the New Forest, which is considered by the siblings as a rite of passage.

They know when they get to a certain age they’ll be allowed the freedom of having an adventure-filled week of bushcraft, making soup out of stinging nettles and, more importantly, being away from mum and dad! 

These trips also help to take the burden off their parents. Children get the chance to experience new things and take part in activities that they maybe couldn’t do with the rest of their family.

Of course I can’t organise all these trips without taking part too! When I swing from trees and grab the paddles to go canoeing it gives the children the confidence to do it as well.

These events are great at helping  children find the courage to feel comfortable talking about their situation. We had one boy who hadn’t told his school friends or teacher that he had a poorly brother. When his teacher found out, she didn’t want his family situation to be something he should feel awkward talking about with his peers.

Although daunting at first, he found the courage to lead an assembly, telling his classmates all about his ill sibling, and I felt so proud watching him find the confidence to share his story and being able to support him through that. 

But improving their confidence isn’t the only benefit of the sibling group; it can also help to build friendships and reduce isolation. Some children can’t wait to let go of their mum and dad’s hands, others need a little more persuasion. One girl was incredibly shy and she was nervous about attending events on her own.

I managed to introduce her to another girl of a similar age. They’ve now become great friends and are looking forward to attending the next day together, which is a real positive. Her parents are delighted and hopefully this means she’ll want to get involved in more sibling events in the future.

If they wish to offload, the group provides the siblings with the chance to talk to peers who are experiencing similar circumstances and can empathise with their situation. But they’re not forced to talk about anything.

The best situation is when siblings open up to each other, but what they don’t talk about - because they’re too busy having fun away from the worries of home life - is just as significant. 

The group can help create a sense of belonging and is a way for them to feel important by giving them  their own club which they don’t have to share with anyone. But it’s heart-warming to see that their sibling is always in their thoughts – if it’s the craft day they’ll make something for them, if we’ve been to the beach they’ll bring back a shell for them.

These children are compassionate; they have so much empathy and look after everyone in the group. Because of their circumstances they have to be resilient and have a certain degree of independence, and the sibling group can help them to do that.  

I love hanging out with these remarkable young people. It’s a chance for me to be big sister, although I don’t know if they see me as that!

A COVID-19 update:

It's easy to overlook the siblings of a child with a life limiting condition - as some children go back to school, they may have to stay home for much longer to shield their poorly sibling. But never fear, our Sibling Worker Maria is now back from furlough to bring some fun into their lives as only she can!


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These sibling events help children find the courage to feel comfortable talking about their situation

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