Jordan

Jordan, from Leicester, was supported by our charity for over 10 years and loved our hospice so much, his family called it their second home.

Having been poorly since birth, Jordan suffered from Hydrocephalous, Epilepsy and respiratory problems. He died in April 2020 at the age of 25.

For mum, Julie, Rainbows was a saviour as she describes her life as “challenging”. Not only did she have to cope with Jordan’s additional needs, his older brother by two years, Leo, also has additional needs.

“When I first heard Rainbows was a hospice, I was not interested,” said Julie. “But when we eventually went to stay, I realised that Rainbows could not only care for Jordan as well as I could at home, but they also supported Leo too, giving the boys the time of their lives. When I went to Rainbows it felt like a weight had lifted. I never thought of it as a sad place, there is a great atmosphere and so much support.”

One of the many things Jordan loved about our hospice was the Hydrotherapy Pool. Julie cherishes the memories of it being the only time she could hold Jordan properly with no additional support.

“We had some great family times there,” Julie added. “We were all settled, comfortable and peaceful at Rainbows, especially Jordan. And the help from my Family Support Nurse encouraged me to be that strong advocate for Jordan that I needed to be. She was there when I felt anxious or felt alone in it all.

“Also, it was while I was at Rainbows that I got to know other parents. To meet people who totally understood was such a relief and helped me be strong. As a mum of children with extra needs you have to be mum, carer, nurse, advocate, secretary, appointment co-ordinator, holiday organiser, transport, and teacher in a way that only parents in the same position can understand.”

Julie struggled on a daily basis and Jordan battled with his illness constantly. His communication was impaired, and mobility was difficult for him.

By the time he was at school, there was still no diagnosis and his seizures, and mobility worsened. By the age of 11, Jordan could not bear his own weight on his legs and he needed a wheelchair. He was also tube fed to avoid choking.

Jordan communicated through his eyes and his mum, came to know and love his expressions. “He had a cheeky face and quite a sense of humour,” she said. “He was a real joker; same mischief was always there even as his condition got worse.

“The week that Jordan passed was tough. He had an infection and was making unusual bronchial noises. He had to go to hospital but it was in the height of the Covid lockdown so I was unable to accompany him, and he died without me.

“At this point Rainbows picked me up, it was as though they scooped me up in their arms. I needed help and they were there. They supported me to arrange the funeral and assisted with bringing Jordan to rest at Rainbows. Here we could see Jordan, and I could say goodbye, and slowly come to terms with all that had happened. This process would have been so different in the hospital or in the funeral parlour. At Rainbows I could be with Jordan.

“Leo and Jordan were good friends, they got on well and were good companions. Leo misses Jordan terribly, but that has made Leo and I closer, we have needed each other.

“I’m strong, but I still have my moments. I’m still in touch with Family Support with regular calls. I know that there is always someone at the end of the phone. It is reassuring.”

Another comfort to Julie is a memory tree in our Remembrance Garden, which has Jordan’s name engraved on one of its glass leaves. “It is lovely to remember him there, in this place he loved,” Julie said. “When Jordan died there was a little robin that came so close to me. Recently when I was stood in the remembrance garden a little robin hopped near, just underneath Jordan’s leaf. I’m sure it just came to say hello.