Supporting Siblings of Terminally Ill Children

When Dominic, my youngest son, was 10 weeks old, he was diagnosed with a cancerous mass on his brain, spinal column and central nervous system. Doctors told us it was extremely rare and unlikely to be treatable.

The weeks that followed were extremely difficult. I stayed with Dominic in hospital for the next five months. With no one in the hospital I knew, I felt very alone during those first few days and weeks.

I was referred to Rainbow Trust Children’s Charity and Vicky, a Family Support Worker, visited Dominic and I in the hospital. That gave me a few hours to grab a shower, get off the ward and relish the outside air. Rainbow Trust Family Support Workers step in like an emergency parent and I knew that whatever happened, Vicky would be with Dominic and look after him as well as I would.

My husband wanted to keep things as normal as possible for his brother Zach at home. Zach struggled not having me around. I told him he could talk to me about anything that was bothering him to which he replied, “I can’t mummy, you’re never here because you live in the hospital.” To suddenly be thrown into a situation where his new brother, whom he adored, was very ill, and to have his mummy leave home for a length of time, must have seemed very daunting to a little boy.

Vicky took Zach on days out and to Rainbow Trust drop in groups where he met and talked to other children and families in similar situations. Knowing Zach was with someone I trusted, was hugely comforting. Vicky worked with many families in similar situations and I knew she’d listen to Zach and maybe be able to offer him comfort and reassurance in a different way to me. He was her number one priority. Zach being with Vicky allowed me to give 100 per cent attention to Dominic without feeling like I was depriving his brother.

Rainbow Trust Family Support Workers are like having an extra family member. They offer support in whichever way you need it. Most importantly, they carry out the work they do without any sense of judgment. Unlike friends or family members who have never experienced a similar situation, they just seem to get it and having someone there who genuinely understands and cares about you, your children and your situation, is simply amazing. Obviously, the anxiety of having a sick child is never fully removed but having a team like Rainbow Trust helps relieve some of the stress and often helps the parent of a sick child gain a fresh perspective of the situation which can make a huge difference to the emotional health of a family.

Thank you for supporting this appeal.