Interview with Mum Fiona who has a husband Stuart and three lovely daughters; two who have CF.
What are some of things that were difficult to talk about when you had your first child with CF?
It was an initial shock to start with, three day intensive training at Princess Margaret Hospital (PMH) and then when we came home it felt very isolating, and we didn’t know anyone in a similar situation. It would have been great to have known someone just ahead of us to provide some initial support. Since my first child was born there are now a lot more people at CFWA to provide support for all sorts of different things.
What were some of the difficult things to come to terms with?
The truth of the diagnosis; “are you sure? Could you have mixed it up, she looks so healthy, lots of doubt about the diagnosis”. I wanted it to go away, then I felt really angry “why us”, there was a whole grieving process. It would have been good for someone to say “it’s normal to feel like this and you will get thought it”. To also know that anger is a normal part of this grieving process.
Let’s talk about the Parent Support Group that you facilitate
This group came about initially from a CFWA Newly Diagnosed support group meeting held four years ago. A number of fairly new parents came along and exchanged contact numbers. Fiona has since become a primary contact and event organiser.
Events are usually weekend coffee meetings at King’s Park or an evening dinner, with groups catching up every three months. There is also ongoing Facebook dialogue between parents. It’s great to talk to other parents who are in the same boat, you realise there are NO silly questions and ALL questions have probably been asked before.
Everybody is different. Some people would like face to face support around 3-6 months, other people prefer to have remote support via Facebook or blogs, some prefer to do it by themselves.
What are some of the “should have knowns”?
There are different things for different developmental stages. One of the first shocks I had was with bath toys with holes in them. The water gets into them and they can be a breeding ground for bacteria. There are lots of other cross-infection issues that are really hard to get your head around like mulch and swimming pools. It was hard enough just to get on board with physio routines etc, let alone all of these other things, but now I feel more comfortable with it all. It’s important not to feel guilty, we can only do our best and sometimes you just can’t do physio every day of the week or get the completely right dose of Creon, and that’s OK.
You are a little different in that you have two children with CF, how does that work for you?
It was really different in that my first child is pancreatic sufficient and the second child is pancreatic insufficient. We did not feel so overwhelmed about having another child with CF, however, I went through a whole new phase of grieving in having to learn about enzymes. I was pretty stressed about this and then a beautiful Mum said “at least they will have each other” and my whole perspective of the situation changed and everything was all right. I also knew I had to cope as we don’t have any other family here.
Fiona has three children and she states that it’s the one without CF that often gets sicker picking up all the bugs at school. She hypothesises that this is because the two children with CF are so thorough with hand washing and hygiene and also because of their extra vitamins and antibiotics. The difficulty is keeping the children apart when they have colds etc.
Other difficult questions that some of the parents have brought up in the support group?
Extended families don’t always understand. We have discussed how to tell people not to come around when they have a cold. Most people are good. Some of the older generation still think they will outgrow it because they look so well. This is very frustrating.
Physio, how do you fit it in?
My best advice has been “do what you can in manageable bits”. Some days it really is just too hard, mix it up and get them to do some extra trampolining. Be honest about it. I spoke to the physio and advised her that it was really difficult and she helped me out with a routine that has made it a lot easier.
Food battles are another issue, you’re always worried about growth, what’s normal. The same thing, try and become confident as a parent and talk to your dietician or another parent. I am much more assertive now in asking questions. Vitamins are another issue before they can swallow them, they stain clothes, and we have had lots on discussions, on firstly, how to get the vitamins into the children as they taste horrible, but secondly, how to get the stains out of the clothes.
It’s important to develop confidence in your role as a parent. You know your child best, you know what’s normal or not. Learn to trust your judgement. Remember there are NEVER any stupid questions; someone would have had to have asked it before.
Article from RED Magazine, Edition 1, 2015.