Four year old Jack Robinson and Liam, his twin brother, started school in September 2013 when they were four years old. In January, the school called to say that Jack had fallen asleep in class and asked Marie, his mum, to come and collect him. The next day when he was resting on the sofa, she went over to wake him up. He didn’t move, his left pupil was larger than usual and he was struggling to breathe. He was rushed to the hospital, and days later, Jack was diagnosed with a brain tumour. Marie talks about what it was like for their family, and how they have been supported.
Naomi House and Rainbow Trust
“When the doctors told us there was little they could do for Jack, we spent time at Naomi House, a local children’s hospice. At that point, I had hit rock bottom and I needed someone to talk to. The thought that my child was going to die was too much. The hospice staff contacted Rainbow Trust Children's Charity and a few hours later, Dawn, a Family Support Worker from Rainbow Trust, called and arranged her first visit. I was a bit hesitant at first as we are quite a private family but since Jack’s diagnosis, it had been a whirlwind and I needed help.
"Dawn visited two or three times a week and, initially, came to play with Liam. She took him out and spent time with him, doing things that he enjoyed which gave me some much needed respite. She worked hard to make sure Liam was comfortable with what was happening and spent time helping him create a Memory Box in which he has things that remind him of his brother. She was in constant contact with us, on the phone or visiting."
She helped us bridge the gap
"I was worried about Liam as I had spent so much time away from him being in the hospital with Jack. Even now when I think about it, I feel so desperately guilty about leaving him but Jack needed me more. I couldn’t have left him in the hospital attached to tubes and machines all by himself.
"I was in hospital for seven weeks with Jack and in that time, Danielle, my 22 year old daughter, took on the role of mum in the house. When I came home, it did cause some upset as I tried to step back into my role as mum. Dawn acted as a mediator and helped us bridge the gap. Having someone else around us thinking ‘like a mum’ helped take some of the pressure off me as I was worried about how my other kids were dealing with Jack’s diagnosis."
Together as a family
"Jack died on 1 April just after midnight. I called Dawn in the morning and she came over and spent the day with us.
Dawn has spent time with each of my children. We’ve all built a relationship with her, we all know and trust her. I dread to think where we’d have been without her. I honestly don’t think we’d all be together as a family if she hadn’t been with us. She helped us stay together, she helped ease the tension that built up around us in our grief. Dawn was there for each and every one of us.
"My husband is one of those men who doesn’t want to talk to anyone about this but he talks to Dawn and he appreciates having that outlet. There are things we can’t say to each other as we are so deep in grief so having that mechanism in place has been so helpful to us.
"Dawn came to Jack’s funeral and sat next to Liam in case he needed to leave the service. She has been with us ever since. It’s over a year since Jack died and Dawn has been invaluable. Most charities leave after the child dies but Dawn never left.
"Having someone like Dawn, a Rainbow Trust Family Support Worker, gives you that normality – somebody you can talk to, listen to and who can offer some guidance. Sometimes you can’t say things to your partner or your children and some things you just don’t know if you’re doing right. Having someone there to say, “If that feels right to you, then it’s right for you,” it’s like having someone on your shoulder guiding you but still allowing you to make your own decision.
"We know it’s not going to be easy but we feel strong enough that we can now look forward. Jack will always be with us in Liam but I’m just so glad and grateful to have had someone here for all of us. Thank you Dawn and thank you Rainbow Trust. I know they will be there for us if ever we need them."