Supporting Siblings of Terminally Ill Children

Having twins is a handful but having one that is unwell is even harder. Spreading and sharing your time becomes your priority while trying to tend to your unwell child. Simple things like bathing your new babies and their brother can be terribly stressful.

My son Charlie was born last year with an as-yet undiagnosed condition. Sadly he was too unwell to come out of hospital for Christmas so I left a stocking on the end of his cot on Christmas Eve and went home to be with my husband, Charlie’s twin brother Louis and older brother Jacob. I did all the bits with Jacob like putting food out for Santa and the next day we went back to the hospital to be with Charlie. It wasn’t the Christmas I’d planned, but at least we were together for part of the day.

Just before we were discharged from hospital in February this year, our Community Nurse recommended Rainbow Trust. I knew we’d need as much help as possible when we went home so I agreed. Dawn, one of Rainbow Trust’s Southampton Family Support Workers, came to see us and did an assessment. I really liked her and felt we would get on with her. She visited us three times a week, which took that pressure off of me just having someone else there to help. She’s like having a big sister, she just slots in – I don’t feel like she’s a visitor, she just gets on with it and I trust her, I trust her with my children and especially Charlie who has such special needs.

Dawn spends time with Jacob, giving him one to one time so that he feels special again. She’s also taken him for days out with other children, which has been great for him. Jacob can talk to Dawn about anything that’s bothering him and he knows that she is there for him. That makes such a huge difference to me – it’s been hard for him. When I was rushing around doing things, he told me, “Mummy you don’t listen to me anymore,” and he’s got a valid point. Having Dawn means he has someone special who does listen to him.

She's been amazing. Things would have been so much harder without her. She takes care of Jacob and Louis while I feed or bath Charlie. She also helps out when I have hospital appointments with Charlie. She’ll collect Jacob from school and look after him and Louis so I don’t have to worry about entertaining three children while I speak to doctors about Charlie.

I am really excited about Christmas this year, the idea of having us all together is magical for me. We are going to make a big thing of it as last year just didn’t feel like Christmas. But this year will be special, having all three boys with us at home.

Dawn’s help is like a lifeline, just having someone else to turn to, to talk to and to help with all the little things makes a huge difference to my family.  I’d definitely recommend Rainbow Trust to other people in a similar situation, I trust Dawn with my family and I wouldn’t want to be without her.

Thank you for making it possible for Rainbow Trust to make a difference to families like mine.