When did you feel that you wanted to hear about other people’s stories of caring for someone with CF?
I don’t think there’s ever been a particular time that I sought out people’s stories about living with CF, mainly because we were getting used to being parents and I didn’t have any other way of knowing what raising a child was like. The very fact that there were hospital appointments, percussion, nebulisers and tests, you could almost trick yourself into thinking that was a normal way to raise a child.
The first time I became aware of the wider CF community was when we went to the CFWA ‘Starting School’ workshop. There were a lot of new parents there and it was interesting to hear how they were talking about CF with their kids. And it occurred to us that we hadn’t actually talked to Mary about CF. It wasn’t deliberate, it just all felt normal having CF and it was just the way it was.
It takes a community to raise a child, many others also taking on a caring role throughout this journey. What has it been like sharing this role and how has that helped?
I am astounded by the services and how much help and support there is from agencies and people for CF. When we were first diagnosed, I was under the impression that it was a little-known disease, but what I am constantly surprised by is that it is getting a lot more exposure, and there are a lot of services and help for people. I think we felt guilty asking for that help and support but despite that guilt, we still asked, and we still get that help and that support. And it’s invaluable.
When we were struggling with physio at the beginning, we had Sam from CFWA come and reassure us that the physio didn’t have to be exactly perfect, it just had to be done, and that we would get better and we would gain more confidence. Having that permission to make mistakes gave us more confidence and support while we were learning about the care Mary needed. Having Jo, our home care worker who comes through for an hour each week, gives us a small break by having someone take care of Mary’s physio for the morning. She’s a great person to chat with and have in your home.
I take comfort from the clinicians, doctors, medical staff, the volunteers, the services and CFWA; they help me feel supported and part of a bigger community because you can see that people are giving their time and their expertise and that means more to me than anything else. The staff at the hospital are also very supportive, and I’m still stunned that Ali and Liz knew our names from the beginning even though we were only there four times a year. The recent Conquer CF Ball was just stunning; that there are volunteers who can achieve so much on an annual basis is humbling.
Short films – what do you hope they will achieve?
I think being made aware of the support and services and not to feel guilty reaching out because it’s there for a reason. Sometimes you don’t realise you need help until you get it.
Article from RED Magazine, Edition 3 2019.