Rainbow Trust provides support for families who have a child with a serious illness, offering whole family support regardless of diagnosis. As DUCFS’s charity partner, we were lucky enough to have their executive team visit Durham in November to give a deeper insight to the important work they are doing. Below are extracts from Zillah Bingley’s (Rainbow Trust CEO) address in Durham.
What Rainbow Trust does:
‘A father said to me once, when you’re told that your child has an illness, that means they might die before you, you join the Club. It’s a club you didn’t know existed, it’s a club you’ve absolutely never wanted to be in, but when you’re in that club, you’re so pleased, there are other people. Because what you need is somebody that will walk alongside you all the way through the darkness until there’s light at the other end. And that’s what Rainbow Trust is.’
“Rainbow Trust employs workers to support families in whatever way they need throughout their child’s illness, and if the child dies, to support the family into bereavement. It sounds like a really easy thing to do to say we provide practical and emotional support, but the difference that we make in family lives every single day can be astounding.”
The support that family support workers give:
“People looking at your life before your child gets ill see a snow globe. It looks perfect, everything looks fine. And then the illness comes along, and it’s like somebody’s shaken up that snow globe and everything is all over the place. Everybody rallies around to help- of course they do, because that’s what they want to do. But really quickly, everything settles back down again and your life from the outside looks perfect. But only you know, that nothing’s where it was before. Only you know that everything in your life has changed forever. I think the biggest thing that the family support workers do is help families find their new normality, the normal they have before has gone from it forever.”
“The families that Rainbow Trust support are working hard every single day to build as many memories as they can, because they don’t know how long their children will live. They are having to try and cram a lifetime into what may be a very few short months. And because of you, and because of your support, those families will be able to make even more precious memories, and that is an enormously special thing.”
Rainbow Trust’s work with siblings:
“We don’t want them having all this emotion bubbling up inside them until they don’t know what to do with it. So the work that the family support workers do with brothers and sisters is astounding. They just give them time to be children, which is so important. They give them time to have fun. They give them time to express themselves.”
“When you are told your child might day, everything stops. You want to do what is best for your sick child but you might have work, other children, other caring responsibilities. Suddenly, you need to work out how you’re going to juggle that. That’s where we come in. We can be really practical, we can help take brothers and sisters to school to make sure that their life chances aren’t adversely impacted by their siblings illness, we can give brothers and sisters time to talk to explain to them what’s happening.”
“A 15 year old girl one said to me, which was incredibly poignant, that the best place to cry is in the bathroom. “You can come out of the bathroom with a wet face and everyone just thinks you washed your face. Because I can’t tell my mum and dad how I’m feeling because I can’t add extra pressure to them. I can’t let them think that I’m not okay. I’ve got to be okay for them because they’ve got to be okay for my sister.” But when you’re 15 where do you go with those emotions? When you’re seven? Where do you go with those emotions.”
You can find more about Rainbow Trust’s work on their website.