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Barney's Christmas story
Christmas is a time for families to create magical memories: trips to Santa’s grotto, family visits throughout December, cherished moments around the Christmas tree and over the turkey dinner.
But last year, Holly and her son Barney were in the midst of a difficult journey with Barney’s bladder condition, and it was far from the care-free Christmas they wished for.
‘The feeling of being a useless parent was very much at the forefront of my mind at Christmas last year,’ Holly says. ‘I was a wreck thinking about all the things that could be about to happen.’
Sadly, the family faced constant difficulties with daily accidents that didn’t stop at Christmas. ‘When I was little, I couldn’t stop weeing,’ Barney, now 9, says. ‘It was terrible.’
Christmas was stressful
The problems affected trips out and visits to family and friends. ‘Christmas was stressful,’ Holly remembers. ‘We’d have to cart around lots of spare clothes and it was tricky getting into cubicles big enough to facilitate changing Barney.
'Often, we would stay at other people’s houses. I’d try to pack enough pairs of pants, trousers and pyjamas but, invariably, we’d have to ask to use the washing machine.’
Barney says: ‘It felt harder because I was embarrassed at always being soggy or smelly at other people’s houses.’
I was trying hard to be a calm mummy, decent wife and super teacher – it was totally exhausting and I felt like I had nowhere to turn.
Over the years, Barney had lots of tests before receiving a diagnosis, which led to self-catheterisation.
Holly says: ‘Barney had a nuclear scan, an MRI scan, two cystoscopies under general anaesthetic and Urodynamic testing.
'Then he was diagnosed with Detrusor-Sphincter Dysynergia. It means that his bladder holds much more wee than a child of his age should, but it never fully empties.’
Barney says: ‘I had to have some operations which I didn’t enjoy at all. Mummy was really sad and did quite a lot of crying. She thought I didn’t know.’
‘I felt totally lost, to be honest,’ Holly says. ‘It had been so alienating going through the tests, having days off work and so on. I was trying hard to be a calm mummy, decent wife and super teacher – it was totally exhausting and I felt like I had nowhere to turn.
'No-one I knew had experienced these things as a parent. I felt mum-guilt in a major way – why hadn’t I spoken to anyone sooner?’
ERIC made the difference... I felt less alone
But throughout the family’s struggles, Holly felt she had a place to turn that really helped – and that was ERIC.
‘ERIC made the difference,’ she says. ‘Through ERIC’s online resources, I could see that Barney wasn’t the only one. I felt less alone.’
Barney says: ‘Mum said that the information she found through ERIC helped her to realise that I wasn’t the only child who had wee problems, and she met some other mummies who have sons with the same problem. It’s made her less scared, I think.’
Barney was taught to self-catheterise, which he now does five times a day. At first, it made him nervous, but he says: ‘When I read about other people having to do catheters and the fact that they were okay, it helped me feel more confident.’
Barney wants to be a mentor for other children
Now, aged 9, Barney is doing incredibly well. Holly says: ‘Honestly, he is amazing. He has blown us away with his maturity and the way that he has coped with this change in the norm.’
Recent tests show that Barney’s condition is improving.
‘I think it’s vital that other children of his age know that kids sometimes have to catheterise,’ Holly says. ‘He spent a good while thinking he was the only one! He wants to be a mentor for other children so they aren’t scared.’
This will be the family’s first Christmas since Barney began self-cathertising. ‘We are having Christmas at home this year with caths on hand!
'Is there anything I’m looking forward to? Just not worrying.’
A gift from you this Christmas will enable us to support more families, like Holly’s, who come to us for help.
Please donate what you can to ERIC’s Christmas Appeal.
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