This Children's Hospice Week, we're sharing a special family's story. Mum Hayley explains how daughter Holly's complicated medical needs are integrated into the family, and the essential support they receive from their local hospice.
"My daughter Holly has an undiagnosed metabolic condition as well as cerebral palsy, epilepsy, chronic lung disease and a visual impairment. She has a tracheostomy, a gastrostomy, and is non-verbal. Aside from these medical conditions we see Holly for the amazing person she is - a brave girl who loves to socialise and try new things.
"In the first few years of her life it was hard not to be overwhelmed by all the medical aspects. It was so new to us but we had to learn quickly or else there was a danger that Holly wasn't going to stay alive. We couldn't – and still can’t – afford any slip-ups.
"My husband Gary gave up his business to help care for Holly when it became too much for me to look after her and be mum to my other children Josh and Ruby. We are also lucky to have my sister Rachel there for constant support.
We were just existing
"At first I found it difficult getting over the stigma of going out with a child with special needs, with people staring at us and treating us differently. We were surrounded by our community but felt so isolated because there didn't seem to be families like us.
"We were just existing and I became really low. But I realised that nothing was going to change our situation. Staying at home was the easiest option but it wasn't doing us any good as a family – we had to get out there and create a life for ourselves. We had a handle on Holly’s medical care but we needed to make her life more enjoyable, for her to be a little girl who could have fun with friends and be missed if she didn't attend a birthday party.
"I started finding out and turning up with Holly to events in our area, thinking ‘If you just focus on her being a little girl I’ll deal with the medical stuff and let’s see how it works out.'
Calculating the risks
"We’re not silly and we do calculate the risks for Holly and what we hope will provide her with some stimulation. Holly can’t communicate like we do but she has learnt to use her eyes so we can tell as a family when she’s happy or in discomfort.
"Her temperature control is a big factor. Before we go anywhere we have to ask ourselves: How is Holly? What’s the weather going to be like? What’s the environment like? Will there be somewhere we can take her to warm her up should we need to? We also have to think about equipment: Is there enough oxygen to last us? What happens if there’s a burst in her gastrostomy? Have we got our resus with us? These are all vital pieces of kit that we need to take everywhere with us regardless of whether we go to the local shop to buy a loaf or 160 miles. Gary and I try to cover all eventualities and have got very good at thinking on our feet!
Watch this short film to see all the equipment Holly needs each time she leaves the house.
"In the last few years we’ve tried to get out together as a family as much as we can. We’ve been to Lapland UK and to the top of The Shard, to see Little Mix in concert and to see lots of musicals which Holly loves.
"We’ve even taken Holly camping in Windsor with the International Guide & Scout Camp. That took some organising – over 150 emails! Now she has a lovely group of friends around her and we love taking adapted cycles into our local woods.
"It doesn’t have to be something big. We’ve got a lovely park nearby where we just take a picnic. Even just having an hour out together makes us feel better and like we've done something for Holly.
Finding the strength
"I've changed so much through being Holly’s mum – I've had to be assertive and challenge people to let our family try things together.
"I now do talks in the local area because I feel so passionate about changing things for children like Holly and how important children’s hospices are for families.
"Our local service, Claire House Children’s Hospice has been a vital support and we use them for a whole host of things. We access their Hospice at Home service and when the play specialists come they’re able to give Holly something different while also giving me and Gary a break. The support Josh and Ruby have had from Claire House has been very important.
"I know that Holly isn’t going to live forever, that I’m never going to see her walk down the aisle. Some days it’s really difficult. I’ve got to be up early, plan her medication and feeds for the day, pack her wheelchair, pack the bags, make a packed lunch.
"Sometimes I’m dying inside with exhaustion, but I keep going because these moments where our family are all together are what I will have to remember.
"There have been some magical times in Holly’s life and hopefully there will be more to come."