Holly is 14 and a Girl Guide who loves baking and hanging out with her friends. She also has life-limiting illness.
This is her story, as told by mum Hayley.
Holly has a whole host of complex, life-limiting health needs. She has epilepsy, chronic lung disease, and cerebral palsy. She’s tracheostomy-dependent and she can’t maintain her own body temperature. Her bowel doesn’t work and her bladder doesn’t work.
Holly needs highly-skilled medical care 24 hours a day. The problem is that she gets the care she needs but it’s provided by myself and my husband. There is very little outside support. We’re making very difficult decisions every day to keep Holly alive. We get physically and mentally exhausted. Then when we try to access some support it’s few and far between.
Holly is the centre of our family and we don’t want anything different. We don’t want anything above. We just want to have the right support at the right time that’s really specific to us a family that would enable Holly to live a fulfilled and happy life like every other child.
All her life, we’ve worked tirelessly to navigate professionals and services around her all her life as the fragmented approach to looking after a special child doesn’t really work. Health, social and education services really need to join up. She needs knowledgeable decision makers who have a real understanding of what life is like for Holly and who want to see her achieve her full potential, not just exist. She’s a Girl Guide, she loves baking and going camping, she loves spending time with her friends.
At the moment we receive 21 days a year of respite care a year but that’s provided by a children’s hospice care house, a charitable organization. There’s is no real statutory provision for us that’s guaranteed year in, year out. We live with the uncertainty of what happens if the charitable donations dry up or our children’s hospice isn’t there.
What does happen to us as a family is that we reach crisis point. This happened a few years back. We were receiving no support at all and I was relying on my sister and my close family and friends just to get through, day to day. It was a tough time and I felt really degraded as a mother to have to hold my hand up and say I’m really struggling to care for my child and I’m really frightened about what’s going to happen to my family. That took a lot because you’ll find that most parents like us cope because we have no other choice but to cope. Our child relies on us every day to keep her alive and if we don’t do what we do then Holly is seriously ill.
A lot of the time I find that I’m justifying our need for help. I’m chasing services up, doing the job of other people as well as trying to maintain family life and make sure that my other children’s mental health and well-being needs are met as well.
They’re both fully medically trained and my younger daughter is outstanding. She is tracheostomy-trained. We were driving home one day and Holly had a massive seizure in the back of the van, and blocked off her airway. And my younger daughter knew what to do straight away. Until I was able to pull over, she got Holly breathing again. She’s eight years old.
That’s a lot of responsibility for a child of her age. But she doesn’t see it as a responsibility, she just sees it as our normal family life. And we love our family life.
This is the part of our life that most people simply do not see.
This is the Secret Life of Us.