Lisa Johnston and her husband Jason live in Dorset with their five children. Their youngest child, Kitty, eight, has Kabuki Syndrome, a very rare genetic disorder which affects her muscle tone and mobility. She also suffers repeated infections and kidney problems that need emergency hospital treatment. Here Lisa talks about how short breaks from her local children’s hospice kept her family together:
I can honestly say our marriage would not have survived without Julia’s House.
No-one can imagine just how stressful and exhausting it is looking after a sick child. Caring for Kitty completely took over our lives. For the first four years of her life our life was virtually put on hold because she needed so much support.
I would be at home caring for the children and dealing with all Kitty’s medical demands while Jason went to work. I felt so resentful being left to deal with everything.
We were referred to Julia’s House when Kitty was nine months old. She had weekly care sessions at home or in the hospice and I used the time to be with our other children. I felt like they were completely missing out on a normal childhood because Kitty had all my attention.
But I still wasn’t spending any time with Jason. He would leave home at 5am and arrive back at 8pm, I hardly ever saw him. When we were finally together, at the end of a long day, we would often bicker and row.
As well as resenting his time away at work, I felt guilty and a failure because I was so shattered I wasn’t really doing anything for Jason. He was at the bottom of a very long priority list that started with Kitty and was followed by four other children.
Kitty had nine operations in the first two years of her life not to mention all the times when she would have an infection or develop breathing difficulties and have to be blue-lighted to hospital.
I would be the one rushing off to hospital with her several times a week. The strain and worry were unbearable. I remember sitting on her hospital bed one time when Kitty was about three years old and telling Jason I just couldn’t carry on alone.
Our relationship reached crisis point when Jason came home one evening and told me he was only still with me for the sake of the children.
It was a massive wake-up call. I just didn’t have time to focus on our marriage and relationship and as a result we were pretty much leading separate lives. He was the breadwinner and I was the carer. I felt like my life was crashing in on me. Friends were sympathetic but they didn’t really understand.
We were so close to the edge at that point that if Julia’s House hadn’t stepped in we would have no marriage and our family would be split apart. I arranged to meet Kitty’s nurse, Alex, and that was a turning point. We went to a coffee shop and talked for two and a half hours. I poured out my heart and she was so compassionate and understanding. She didn’t judge me at all.
Within a week Alex had organized an extra emergency package of care for Kitty to enable me and Jason to go out of the house, somewhere neutral where we could talk and – more importantly – actually listen to each other, away from a house full of children and the constant bleep of Kitty’s feeding machine.
It took time to rebuild our relationship. We still go out once a week to talk away from home and catch up with each other. Looking after Kitty is important, but looking after ‘us’ is important, too. Our marriage is stronger than ever now.
Just a few hours respite a week, every week, just the two of us, has made an enormous difference to how we cope as a couple and as a family. You need that regular time away from the stress and worry and noise of everyday life.
When your child is ill you can’t just get a babysitter in, you need experienced help. If you can’t call on friends and family you need that support to come from elsewhere – and for us it was Julia’s House. Having that help saved us.