In anticipation of filming our CFTalk: Parents and Carers short films, we spoke with a range of carers from the community about their experiences caring for someone with CF.
When did you feel that you wanted to hear other people’s stories of caring for someone with CF?
It was about three or four months after Amelia was born. I typed a CF related question into Google, and it popped up with a CF support group. It was an international group, so there were people from all around the world with different experiences and perspectives. I hesitantly joined it as I wasn’t sure what I would find there, however they were so supportive, welcoming, and lovely. There were a few other Australian mums on there too, mainly over east I think, and hearing their experiences made me a little bit less scared because they were all so positive, open and non-judgmental. I just felt like I could ask questions there that I might have felt silly bothering the doctors about or discuss things I wouldn’t feel comfortable talking about with someone who doesn’t have a child with CF because they just wouldn’t understand.
What are the benefits of connecting with other carers and hearing their stories?
For me, I found just knowing that there are others in a similar situation who are there to listen and support me if I need to be invaluable. Connecting with other carers has allowed me to share the highs and lows of this journey. Hearing about other people’s experiences has better helped me to understand the disease so I can better support my daughter and family. Being able to ask questions openly and learning as you go with likeminded people helps build your confidence and grow your knowledge as a carer and your child’s advocate.
We’re here to support each other, and I find just hearing other people’s stories has made me feel more optimistic, I suppose because I’m hearing more and more positive stories. We’re all connected by this awful invisible illness, but we are moving in the same direction towards a cure and it is very uplifting.
Do you have much contact with other carers and if so, how do you manage these contacts?
The Ladies High Tea is the one event that I have participated in every year since Amelia’s diagnosis, and meeting so many strong women through that has been amazing. They are all such passionate, lovely, normal people, leading extraordinary lives despite CF. It’s been a really unexpected place for friendships to flourish, and meeting mums with children the same age as Amelia has made it easier to relate and share experiences since we are all at the same life stage. I think talking to other carers, especially other mums for me, really does help. Dinners and coffee dates are also a great way to catch up, although it can be hard to coordinate since our little ones can’t come along.
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?
I have been really lucky to have an amazing support network with family and friends who will drop everything and bend over backwards to help if I need it. My husband works really hard to support our family and it has allowed me to be home with our daughters. My mother-in-law helps me regularly each week with swimming, dancing lessons, and appointments which I couldn’t do without her. My mum lives in Albany and is always fundraising for CFWA and trying to help by raising awareness about CF. I am very close with my sister and she is my sounding board and voice of reason if I ever feel overwhelmed or upset by the obstacles CF can throw at us.
I utilised CFWA’s support for the first time recently after Amelia’s first ever hospital admission. It helped having people I knew had Amelia’s best interests at heart along with the expertise and resources she needed. I think Amelia’s recent admission has taught me to accept help more when it’s offered. I have always had the mindset that if I wanted something done properly to just do it myself and felt asking for help was a sign of failing, but I am getting better at letting go and I now know the help is there for a reason and to utilise it when I need it.
What would you hope that these short films will achieve?
I would hope that these films help remind carers that no matter your individual circumstances, there are others out there who understand, who care, and who are here to support you if you need it. It is important to create unity amongst carers, and for them to know that their contribution is making a difference to not only the individual they are caring for with CF, but to the wider community.
I think we as humans can often be extremely hard on ourselves and just to be told you are doing a great job can mean the world and be the encouragement needed to pull yourself together and keep fighting. I hope they help carers realise they are not alone and to not to be afraid to ask for help if they need it. I’m sure these films will also be a great way to help people share their experiences, their challenges, their achievements, their concerns and their hope. Also, that life doesn’t have to be put on hold or drastically different because of CF, it’s just a different version of normal.
I think they will remind people of the importance of supporting each other and taking time to care for themselves too, since you can’t give all of yourself if you are running on empty. I would hope that it helps carers realise that they are enough, because I think often you question yourself just as a parent in general, let alone caring for someone with extra needs. I guess in saying that, I still struggle to think of myself as a carer. I just think of myself as a mum who is doing whatever I need to do to keep my kids happy and healthy. I would hope other carers take away from it that they’re doing a great job, and every experience is going to be different so keep doing what you are doing, you’ve got this!
Is there any advice you think would help other carers?
To take one day at a time, create a routine that works for your family, and to make treatments as fun as possible. I think despite being told not to, all parents with a CF diagnosis go and do a Google search, which returns some terrifying results. A lot of the information out there is out-dated and won’t be applicable to our kids. It is so easy to scare yourself, and then exert that anxiety and your fears onto your child, which again is not in their best interests and is not fair on them. Just know that not everything is applicable to your child, and no two cases of CF are the same.
Be in the moment and be as present as you can be, enjoying your child for who they are in that season of their life. But in saying that, I think it’s also really important to make sure you are making plans for the future and setting goals along the way, as there is going to be a future, and it’s looking brighter every day for our little warriors. Everyone is really positive in the CF community which helps you to stay encouraged and motivated, and hopeful that the cure’s right around the corner. I can’t help but feel really positive for each individual.
I am so beyond grateful for the generation before us who paved the way with research, fundraising, awareness, and clinical trials so our CF kiddies don’t have to endure what they have. They should be really proud of themselves, and everything they’ve accomplished, and the legacy they will leave behind.
The CFTalk: Parents and Carers films can be seen here.
Article from RED Magazine, Edition 4 2019.