Life as a CF Sibling

Elise is the younger sister of Ingrid, who has CF.

Having a sister with CF, do you feel like your childhood was different to that of your friends?

Yes, but not in terrible ways. I remember hospital visits, which I liked because I got time off school. I also remember that my friends liked coming over because we always had good food in the house. I have also known a lot about the respiratory system from a young age, which I don’t think is very common!

Growing up, I didn’t realise the seriousness of CF for a long time. It was a part of our everyday conversation, so I don’t remember feeling overly worried about her.  I remember going on swimming camps when we were young and Ingrid had to do her physio and I remember realising then that our family was different.

Ingrid was also often well in childhood, so I don’t remember it necessarily being a negative thing. Mum and Dad made a real effort to make physio ‘family time’, and so we would often read books together while Ingrid had her treatments.

Did your parents treat you differently to Ingrid?

Yes. There were specific foods for Ingrid that I wasn’t allowed to eat. But we are 6 years apart in age, so I think there were always going to be differences anyway. As Ingrid is the older sibling, CF has been a part of my life from the very beginning and I have never known any different. Mum and Dad worked really hard to not treat Ingrid and I differently and they always had the same expectations of both of us.

Since becoming a mother myself (Eleanor, 4 and Hannah, 9 months-??), I have an even bigger appreciation of my parents. I have such a huge appreciation of parents with sick children and realise the value of having a healthy child; it really is a miracle.

Do you have a close relationship with your sister and do you think CF made your relationship stronger?

Yes definitely. We have a very strong focus on family and women looking after each other in our family. I think we would always have been close, but this has probably made us even closer. We have a strong sense of looking after each other. When I was little Ingrid looked out for me and as I have got older I have been able to reciprocate.

Ingrid now has a very important role in my daughters’ lives as a very involved aunty. She would do anything for them and they love her. She also really helps me out a lot and appreciate that she and her partner are there for our family

Ingrid underwent a double lung transplant in 2011 years ago, how did this period affect you?

The transplant stage was really hard. Ingrid had to have her transplant in Sydney, so she and her partner had to move away from all their support systems, which was hard for everyone. I felt I was in a really hard spot, competing in my role as a mum and also being there for my sister. Luckily my husband was able to take time off work and stay home with our daughter while I flew over to Sydney for a couple of weeks following her transplant. It was a really difficult time for the whole family, but I was glad I was able to be there and support Ingrid and her partner.

Before the transplant when she was really sick I was very conscientious of making sure we spent as much time together as possible. I have come to realise how precious time is. As a child you don’t understand this and often take a lot for granted, but I think that’s ok, that’s what childhood is; parents need to let siblings just be kids.

Have you seen yourself taking on a caring role at any point?

I don’t see it as a specific role, I just see it that if I can make things easier for Ingrid I should because I love her.  She has always been a very independent person so hasn’t needed a lot of caring. When she was sick there were times when she needed her family and friends around her to help share the load, so we did.

Have you ever felt guilty being the ‘healthy’ sibling?

No. At times I’m very sad for her. There are times I’d do anything to trade places with her. I don’t think she would ever want me to feel guilty either. She has a lot to be proud of; she has lots of positive things in her life, very successful career and I don’t want to patronise her by feeling guilty. I am very proud of her.

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