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Rachel's Story

At one point she was in hospital for seven months, fighting for her life.

Rachel was born with a life-threatening heart condition and has spent more than two years of her life in hospital, in intensive care or high dependency units. At one point she was in hospital for seven months, fighting for her life. 

She had her first operation when she was four months old and strong enough to cope with open heart surgery. Every time she goes for a check-up the doctors say it is a miracle she is still alive. The reality is, though, she’s not expected to make puberty. It is just too sad; we try not to think about it.

Julia’s House have been supporting us since Rachel was two. We used to live in Marlborough in the early days when Julia’s House had only just started its Wiltshire service. Back then only families living in Salisbury or just over the Dorset border could get support, so we weren’t in the catchment area.

It was fantastic when Julia’s House started covering the whole county. Having care at home was something Rachel could cope with and really worked for us, enabling us to use the time we would have spent travelling. 

There have been so many times when we have nearly lost her. She went into hospital for routine heart surgery and was due out eight to 10 days later. It was seven months before she was stable enough to leave. Medics were literally fire-fighting to keep her alive.

We’ve had to sit down with doctors and have that difficult conversation about resuscitation and what happens at the end of her life.

By the time we came out of hospital we were absolutely desperate, totally exhausted – and anxious about coping on our own at home. We had been used to a nurse at the end of buzzer but now it would be down to us to make those judgement calls about the care she needed. We felt under enormous pressure. 

Julia’s House could see we were on our knees at that point and organised the support we so desperately needed. A that point we literally couldn’t face anything, cooking meals for ourselves, going out of the house, we were shattered, ill mentally and physically and barely functioning.

Rachel has so many medical needs – she came with the instruction manual from hell. There is no other help out there – people just don’t feel comfortable taking on that pressure of responsibility.

We don’t have family nearby so we don’t have any physical support. We find it hard to trust strangers with Rachel because we know she finds that hard and we worry. 

To have regular nurses and carers from Julia’s House that Rachel has got to know and love supporting us all has made the world of difference. Julia’s House has become that extended family for us, like aunties and grandparents.

Julia’s House are good at reading a family’s barometer, picking up when the pressure is too high or the mood is too low. The nurses and carers are not fazed by anything and that’s hugely reassuring. They are very tuned in, gauging a family’s needs and adapting how they work to fit round these.

The service we get is phenomenal. Having a care date on the calendar is something to cling on to – it’s a peg to hang the rest of the week on. No matter how tough things are, we know we have that break to look forward to, that bit of breathing space. 

It is lovely for Rachel to have that break too, to be the total focus of the care team. When she sees the carers coming she puts our shoes on the mat by the front door ready for us to go out. We get booted out so that she can get up to no-good with them!

We want to make the most of every moment of Rachel’s life – even the moments she doesn’t spend with us. It’s about giving her the best possible life, a life filled with love and fun.

We still can’t get over the feeling of being able to walk out the door and have a few worry-free hours. Every single time we step out we look at each other and say “this is so weird!”.  We go for walks, out for a coffee, sometimes meet friends – it is good to be able to prioritise yourself for a few hours. 

We have enjoyed the parent activities organised by Julia’s House, particularly meeting other parents. We are not all in the same boat - every situation is different – but in similar boats.

There is an understanding we all share as parents about each other’s situation. We can talk about what we are going through if we want to but It’s as much about what isn’t said. There are none of those awkward conversations.

People outside that circle either don’t know what to say to us and avoid saying anything or just don’t get what we are going through here, what is facing us.

Parents will chat to us about the onset of their child’s teenage years and how they are dreading what’s coming. We are not even going to get those years. We’d take all the teenage tantrums we could get if it meant still having Rachel.

Rachel has given us more than we have given her. She has made us value life more and appreciate the simple things. We don’t begrudge a single second of the time we have with her, not even the tough bits of parenthood or the hospital stays. It has all been worth it – more than worth it.

Read the rest of our Spring 2020 newsletter here >>
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Having a care date on the calendar is something to cling on to – it’s a peg to hang the rest of the week on. No matter how tough things are, we know we have that break to look forward to, that bit of breathing space.

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