Brian House staff nurse Janet Miller has a unique perspective on the care the hospice provides.
She has spent the past nine years working at the children’s hospice as part of its specialist nursing team – but first stepped through the doors with her own son Adam almost 20 years ago.
Adam was born with a very rare genetic disorder that left him life-limited and with multiple, complex needs. Brian House became a place of respite for him, from his first visit when he was eight until his death in 2003, when he was just 13 years old.
Janet said: “I suppose I do see things from a different perspective, and it’s all because of Adam, who took us on the most amazing journey. He was loveable, funny and had a charm that literally drew people to him.
“Even though he faced enormous challenges he was a happy boy and the absolute centre of our family.
“We took him abroad, took him camping, went swimming and did everything we could to let him experience the things other children take for granted.
“Brian House became an important part of family life, giving us respite and the opportunity to focus on each other knowing that Adam was being well cared for. His condition was so complex that there was nowhere else we could ever leave him overnight, and though the thought of him being at a hospice initially made me feel anxious,
“I quickly realised that Brian House was very much about life, not death, and about making some amazing memories for us all.”
When Adam became particularly unwell he underwent surgery, but died at home several weeks later. The family used the Butterfly Bereavement Suite at Brian House, which allowed them to say their goodbyes in the days before his funeral.
Janet said: “We felt so supported. The nurses helped us get through what was such a difficult time; it felt as if the centre had dropped out of our world.”
But afterwards, Janet embarked on a new journey. She had always worked part time to fit around Adam’s schedule, but decided to go back to college, take GCSEs and A Levels and embark on a new career.
She started to volunteer at Brian House, then trained as a nurse and eventually joined the staff.
She said: “I always felt Adam was given to us for a reason and perhaps the reason was this. I channelled so much energy into retraining and it helped me make sense of Adam’s life.
“Now I’m a senior staff nurse at Brian House and I’m the one helping support other parents with life-limited children. I understand the pressures they face at home, the constant disruption to family life, the uncertainty about the future; and I know what it’s like to lose a child.
“But we’re all different. I never assume that I know just how another parent is feeling, or how they might cope in difficult situations. I’m a parent and I’ll always be Adam’s mum; but first and foremost now I’m a nurse, part of a team offering exceptional professional support.”
But of course there are daily reminders of Adam at Brian House: a leaf with his name on the beautiful memory tree; a page in the book of memories in the Butterfly Suite.
Janet said: “Adam will always be part of our lives. My older son Daniel got married and we made sure that Adam was spoken about and remembered as part of that occasion. It’s actually only recently that I parted with his wheelchair.
“My daughter Ellie had said the empty chair was too sad a reminder and perhaps she’s right; because our overriding memories of Adam are the happy ones.
“Our lives were enriched by him. He would have been 27 now and you sometimes find yourself thinking ‘what if?’, especially when you see your other children reach birthday milestones, but for Adam it just wasn’t meant to be.
“I’ll never forget first walking through the doors of Brian House as a mum in need of help. Now I’m here to offer nursing support to other families, doing a job I love, and it’s nice to think that in so many ways it was Adam who inspired it all.”