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Caring From a Dad’s Perspective

Paul is a family man who has a gorgeous wife Kerry and two lovely daughters Ruby and Abbey.  RED asked Paul a few questions about life from a Dad’s perspective.

When you received the initial diagnosis of CF with your daughter Ruby do you feel that you and your wife had different reactions about this?

Kerry was very emotional and so was I, however I felt that I needed to think practically on how to manage it, I felt I needed to be the strong one.  I didn’t show that it upset me as much as it did.

It took a while to accept the diagnosis and to put things into perspective.  Having support of so many people and agencies really helped put things into perspective.  I never denied or got angry about it I just tried to be practical.  I knew that if we kept at it we would eventually get on top of things.  A couple of hospital visits were really bad, not knowing what to expect and everything been so different and a bit overwhelming.  After a while you learn that hospital is a good place as she is going to get better.  I try to be excited and optimistic about things, like the new hospital, it makes it easier.

Do you think having a child with CF has changed your parenting/caring style?

I do treat both children differently because I worry about Ruby’s health. I’m often a lot

harder on her because I worry about her.  Sometimes I felt guilty that I didn’t spend as much time having fun with her because so much time was spent doing treatments.  In the last 5 years a lot has been the same, but our thinking has changed around treatment, it’s easier now that we are in a good routine.  It’s easier to have an attachment with Ruby now that she is doing a lot of the treatment herself.  It’s more part of life now; we can’t change it so we just get on with it.

Being a parent is a huge learning journey, sometimes having a child with CF can be very stressful particularly if they require a medical procedure or refuse to do physio. Are you able to share some thoughts on how you manage this, what works for you?

It was important to accept that she has CF and we can’t change that, we are different.  The first few times at hospital were very confronting.  Lots of other kids you could see something was wrong but with CF you can’t see any physical stuff and often the kids are just as sick.

Lots of little things help; knowing that agencies like CFWA are there and that people care.  We were given a Variety nebuliser, it wasn’t so much about the money it costs but knowing that someone cared enough to get this for us really means a lot.  My niece did a talk on CF at her school recently and did a HBF fun run to raise money.  These things really make you feel like people are supporting you.

Tips for new parents?

Routine is really important. Learn from what you are doing, particularly like when you go to hospital e.g. we collect coins so that we have plenty for the parking meter.  Also think about having things to keep you busy as well as your child when you go to hospital.  Don’t feel guilty about using support networks in hospital e.g. clown doctors, radio lollipop and the CFWA hospital survival bags.

Anything else?

It has sometimes been hard to balance work life with treatments.  The weekends are hardest for routines and when I work a lot I get a bit out of the loop regarding correct dosages of medications etc.  When she was first diagnosed I was stressed about how to manage treatments and work, but now I am a lot more relaxed.  It’s also difficult to balance time between the two children especially when Ruby goes to hospital.  Now we are pretty relaxed about hospital and sometimes when I see a new family I recognise their distress and remember what it was like.  I feel like maybe I should go over and say “it will get better” because it definitely does” now we just take it all in our stride.

 

Article from RED Magazine, Summer 2013.


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