Haven House is a breath of fresh air, by mum Jayne

Liam has severe sleep insomnia. He can be awake for much of the night sometimes from 2am onwards. When’s he’s awake, I’m awake too. It’s exhausting.

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Liam was just six weeks old when he was diagnosed with Chromosome 4 Deletion. Soon after birth Liam was rushed to intensive care after turning blue. He had an under-developed jaw and he couldn’t swallow. Following numerous tests, I was given his diagnosis. Liam is registered deaf and blind. He is tube fed and unable to talk. I’ve lost count of the number of hospital appointments we have had.

It was our community nurse that referred us to Haven House when Liam was just eight months old – he is now 11. Back then I was a young mum just 21 years old, I knew I needed help. At first, I wasn’t ready to leave Liam overnight. Now it’s a different story. Haven House is the best place for Liam.

“During the pandemic, I had no support with caring for Liam. I became very ill and went mentally downhill. It was a matter of survival. I rang Haven House in tears, and they supported us with respite care. They were a lifeline for me and for my family.”

My day starts in the middle of the night as Liam can be up from 2am. I must be with him. He has no sense of danger. Like most children, Liam can be very naughty. He’s cheeky with a strong personality. Even though he has a lot of health problems, it’s his behaviour that is one of the most challenging things. He must be supervised constantly. He gets bored and frustrated and will then pinch, pull hair, kick, and pull his feeding tube out.

During this last year I found I couldn’t cope any more. It was agreed that Liam could come to Haven House for two nights a week. If the hospice didn’t step him and support, I don’t know where I’d be or if Liam could remain at home. I live for that respite time. The time that Haven House gives us is not just essential for our mental wellbeing it’s also good to have a physical break too.

The time he spends there is so helpful for me and for Liam’s six-year-old sister Molly. I don’t need to worry when he’s at Haven House. Molly has massively benefitted too. She knows where he is, she knows he’s safe and she gets a normal life. It’s the only time we get to do things together. Even if it’s something simple like going out to dinner, Molly enjoys spending that time with just me.

Molly also sees the Haven House play specialist Rowline once a week. Molly  likes her and it’s important for her to have someone else she can trust to talk things through. She enjoys the play and gets what she needs out of it. I feel it’s important that she feels part of Haven House. It’s not just one sided for Liam. It’s for us as a family.

Looking back when the H-word – hospice – was first mentioned I was petrified. It can be such a scary word and yet, when you get to know the care you realise there’s nothing to fear.

“The nurses and carers give 120% and always greet you with a smiley, happy face. I can’t imagine what our lives would be like without them.”

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