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 other people’s stories of caring for someone with CF?
I have CF in my family, so I didn’t feel the need to go out to the community or be in a group when Willow was born. We had to do IVF, so it was a 1 in 4 chance of having a baby with CF and when Willow was diagnosed, I had my cousin with CF and my aunty to speak to.
What are the benefits of connecting with other carers and hearing their stories?
My husband Jim and I met another mum, Justine, and we’ve all become really good friends. I’m a hairdresser so I do her hair, and she cuts our dog’s hair because she’s a dog groomer. It’s very hard because our kids can’t be together, but we have a connection through CF and friends. We go on the Cystic Fibrosis WA (CFWA) Parent’s Retreats where we meet a lot of other parents, and also the high tea that the girls put on at CFWA. And that’s really nice too, because then I get to meet other people that are in the same boat as us. Then you happen to bump into them at clinic or on the wards when you’re admitted.
The first retreat was two years ago. That was quite a big thing for me because you can stay a bit closed in, I think, when you’re a CF parent. If you’ve got a bit of a support, like I’ve got Justine, you can bounce off each other. She encouraged me to go, and it was her first one as well, and we loved it. Then we started going to the high teas as well. You meet the grandparents of the CF kids as well, and my mum normally comes along. Things like that have been really lovely to do. And I find the girls at CFWA are amazing; you know they are always there as well.
Do you have much contact with other carers and if so, how do you manage these contacts?
I know some people are on a Facebook support group, but I stay away from that and it’s my personal choice because I don’t want to hear the negative side of things, or the gossip, which I find some of those forums are. But if there’s an event I will attend it, and it’s really nice to catch up.
It takes a community to raise a child, with many others also taking on a caring role throughout this journey. What has it been like sharing this role and how has that helped?
We have a lot of support for everything with family and schooling, even the wider school community are all on board with it. They actually have another child with CF at school as well now. The mum joined the school and then heard about Willow and approached me for advice as we have been there since kindy. So, we connected, and I helped her along and put her in touch with CFWA to come out and do some school education.
CFWA coming out to the school is a big help, because they explain it so well when I don’t know what to say. And they’re always there for you if you need them. When we first went into kindy and spoke with them about hand hygiene, the school re-did all the toilets and put hand sanitisers through all the classrooms. And now they have hand dryers as well as paper towels. The school have been really helpful and got on board with it all and have always said anything that needs to be changed just let us know.
Willow has amazing friends at school as well. They say, “Willow have you had your tablets?” Always. So, she’s got a lot of people supporting her which helps us. We do try and get on with it just like everyone else.
What would you hope that these short films will achieve?
I think everyone can relate to somebody and then that can lead to getting in contact with people to help you, especially if you’ve got no family back up or have no idea when your baby is first diagnosed.
So, I think every step of the way; schooling, coming into hospital (that’s a huge thing as well) etc. if there’s someone there to talk about that on the film, that would help. School is one of the hardest things to get your head around because you know there’s heaps of kids there, and there’s sickness, so if you’ve got someone that can talk you through it, and back you up and put you in the right direction, I think that really does help. If you’ve got a place where you can go to look and think, oh they’ve gone through that as well, it just really helps.
Is there any advice you think would help other carers?
I have people I can talk to, and I think that really helps. Having something like short stories from other carers for people that don’t have anyone to talk to or have no idea, would be really helpful.
Having a family member with CF has meant that Willow, at nine, has gone through seeing people have transplants and seeing what happens when it hasn’t worked. We’ve had support through the hospital clinical psych to help Willow get through that side of things as well. Because she’s very young and knows that she’s got CF herself, we find we have to be honest with how it is. Someone else might be going through that as well.
When my cousin was born, they didn’t have the antibiotics and stuff that they have as babies now, whereas when Willow was born, they were straight onto that. All the medications have come such a long way and that’s why they are so much healthier these days.