CFWA are in the process of developing a new series of short films, ‘CF Talk’, featuring carers of people with CF. As a prelude to these films, we chatted to some parents about their experiences.
When did you feel that you wanted to hear about other people’s stories of caring for someone with CF?
Looking back, it took me quite a while to engage with the CF community. Having a child who is pancreatic sufficient with minimal symptoms seemed to be at odds with other’s experiences. I think on reflection, perhaps I just wasn’t ready to connect with those experiences as it meant confronting the uncertainties that come with CF. The thing that changed all this was the need to advocate for improved hand hygiene resources at our school to reduce the risk of infection. CFWA put me in touch with another CF parent who had a positive outcome with her school, and through this connection, I joined the WA Parents and Carers of CF Facebook group. This reasoned pathway was probably the best way for me to become involved with the community because I felt I needed a purpose to somehow compensate for having a child with minimal symptoms. The Facebook page is a great space to listen and engage with other parents and carers. It’s great to see many families supporting each other in this way; it’s an evolving space and I hope new members feel welcome.
What are the benefits of connecting with other carers and hearing their stories?
Everyone is in a different place, looking after people with CF at different ages and stages, and connecting with others in an informal context allows for discussion that you wouldn’t otherwise have. It’s great to be part of a community that ‘get it’ and you can feel normal among them even though you might not have met in the traditional sense. It’s great to see everyone supporting each other and being able to offer reassurance to another parent/carer because you know yourself that some days are extra hard.
Do you have much contact with other carers and if so, how do you manage these contacts?
Although I’ve always known there are several organised events through the year, I’m really quite new to the social side of our community. Having said that, this year I attended both the High Tea event and the Conquer CF Ball and had an amazing time! My recent practicum placement at CFWA also means I have been able to meet with even more of our local parents and carers, and it’s lovely that names and faces are becoming more familiar. What is really shining through is the value of connection, whether that’s in person or reaching out on the Facebook page. Our community is full of amazing people who each have their own unique experience with CF but within that, there is a wealth of shared knowledge and understanding.
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?
Aside from the continuity of care at the hospital which has been great, we have had support from CFWA over the years. Last year, physio had become very stressful and, among other things, we were just worn down. It was after a call to CFWA that we had Jo, our home care worker, come to help us out of the physio rut and get us back on track. She has been an amazing support, and her kind and caring manner really helped turn things around. We are very lucky to have her. I recently attended the CF High Tea and Conquer CF Ball and was amazed at how many people are involved and working so hard to help the CF community. Now I’m connecting with more parents and carers; I’m amazed by the strength, resilience and drive of our local community.
Short films – what do you hope they will achieve?
I hope these stories help connect our community, especially parents and carers who are not quite ready to step into the wider world of CF. I think the nature of the videos may be a gentler way to learn about others in your community at your own pace and from the comfort of your own home.