Caring for a seriously ill child is one of the most stressful and traumatic experiences that a parent can have. For many months, even years, the mental health of parents can be under severe strain, which is why supporting emotional wellbeing is one of the areas where Rainbow Trust Family Support Workers can have the most impact in helping families.
Reuel, five, has an undiagnosed neurological condition which is very complex and includes global development delay, reflux, unsafe swallow (at risk of food and drinks going down into the airway) and epilepsy. Reuel is nonverbal and unable to sit up unaided, but he has a smile to light up a room.
Reuel was a healthy baby boy. It wasn’t until he was seven months old that his mum started to see signs something was wrong, and since then it has been a long hard road for all the family. Reuel has been in and out of hospital for most of his life which has had a detrimental effect on everyone.
Charlene says she is always on edge, her anxiety levels are constantly high, they can never plan anything and don’t live a normal life. Charlene says that until Rainbow Trust came along, they had no support, she would cry all the time and get very depressed.
"I’m so glad you’ve come into my life. I just wish I had known about Rainbow Trust sooner. We have had many professionals involved with Reuel, but they only focus on Reuel’s health needs, they just come in and out of the family home. Rainbow Trust has such a holistic approach to their support which is family-centered, it’s the best thing.
"When we met our Family Support Worker, Abi, she was a breath of fresh air. She has helped to rebuild our family, we all love her. She has helped so much with so many things from helping to apply to other charities for financial support, getting a specialised car seat for Reuel to furniture for his bedroom, all of which we wouldn’t have been able to afford.
"Knowing that Abi is at the end of the phone if we need her, I can talk to her about anything. She understands."
Family life can be restrictive for Reuel’s brother Moses, as they can’t just pop to the park or even play in the garden without some planning, everything revolves around Reuel. Charlene has had to be away from home a lot, in and out of hospital with Reuel. Rainbow Trust Family Support Volunteer Michael has also been there for Moses.
Before the pandemic Michael was going into the family home once a week to give Moses his undivided attention, focusing on his needs, on what he wanted to play and what was going on in his life. Charlene said that this has made Moses feel special, as he has someone to visit just for him.
Moses used to look forward to every Friday after school when Michael would come over and would wake up every Friday morning asking if it was Michael day!