Katie Wagner (coordinator, peer support group for teens with chronic conditions): As you can imagine, having a chronic illness as a teenager is a big impact on the teenager themselves, but it also has a big impact on the family as a whole, so there’s ferrying the patient to and from the hospital, there’s encouraging them to take their medications, or sometimes forcing them .... So there are a lot of things to factor in for the whole family.
Samira (mother of 4, 1 with a chronic condition): It’s very hard, effects everyone in the family, it affect like most of the time, I’m in the hospital, like my other daughter, she felt like she’s being left out.
Samira (mother of 5, 2 with a chronic condition): You know, we had to learn how to – what they could eat, what has potassium, what has too much sugar, what’s too much ratings of carbohydrates, we had to learn all that from scratch. And I was just living on edge, I guess. And forgot that I had the other 3. Not forgot, but wasn’t focusing on .... It was just too much focus on them, and they didn’t like it and it made them more nervous.
Katie Wagner: A lot of the time the focus is on that child with the chronic illness, which makes things quite hard for siblings. So it’s important to really keep it balanced in the family unit. And know that there is support out there if you do need it.
Kate (mother of 3, 1 with a chronic condition): I had the choice of whether I was going to clean my bathrooms or sit with my other kids and read them a story. It was – Rosie took ten hours a day to tube feed. My other kids needed me. I needed to spend quality time with them, so I got myself a cleaner. They just come in once a fortnight, and they just do the floors and the bathrooms, and for the – that means I might have to get my hair colour from Aldi for seven dollars instead of going to a hairdresser, or maybe I don’t buy – we don’t have takeout, but I know, even if we’re in hospital, the bathrooms are going to be done, and the house is going to be vacuumed. And so keeping short accounts with the house, I keep my sanity by keeping organised.
Marlene (mother of 2, 1 with a chronic condition): Being in a wheelchair, we have to plan every time we go out, how are we going to get there, how are we going to get in there? Are there steps? Because even if there’s one step, we can’t get him up. Is there a toilet that’s accessible that’s big enough? Lots of planning. He also, he tires easily, he can feel sick quite often, just at the drop of a hat basically. That’s something that tends to pass, tends to come and go fairly quickly but when it happens, you just have to go with it.
Kate: We’ve ended up as a family having many, many international homestay students coming and living with us. And that has been twofold. It’s been a financial input to the family, but it’s also because as a family we haven’t been able to travel anywhere, so for the whole household, it’s meant bringing the world into the house. And teaching our kids about other cultures, other nations. But at the same time, enriching the family, so that then we’re not Rosie focused 24-7 but looking out.
Samira: Now we just take each day as it comes. And just focus on whatever happens and how to deal with it. We’ve gone back now and picked up where we left off with the other children in taking them back to the activities that I never had time for. And watching them excel in that sport or that area, and I’m just so happy that I did.
Kate: One of the things that we do is we always sit down for dinner at the table. That, I covet that family time, and we discuss the day, and there’s no television on, there’s not even music on, and so there’s that mutual time of just unpacking, unpacking the day. And hearing each other. And that’s important.
Samira: I treated her like any other normal child, it’s not about her being sick all the time. That’s the best way.
Mae (22, living with a chronic condition): I still have to do my chores, I still have to maintain a normal sort of lifestyle and that, so I believe the normality, is something that’s always kept me grounded because you sort of need that in your life.
Samira: She has her share of doing the dishes or cleaning or whatever, like if we’ve got guests, she’ll be there to entertain and everything.
Mae: Normality is something that I do treasure quite a lot, and it’s something that I hold dearly, because at the end of the day, you just need some normality in your life.
Katie Wagner: I also think it’s really important for the parents to take care of themselves. A chronic illness doesn’t just affect that patient, it affects the whole family, and we see that with a lot of our families. Like they go through a lot of stressful times. And they kind of neglect themselves a little bit. So I think it’s really important to kind of reach out and build their own support network as well.
Samira: My husband, he was like working, he’s a mechanic, diesel mechanic and works on the truck, so he’s always tired, and needs to come home. I try to get him not too much involved with Mae because he needed to concentrate on his work. She’s fine, she’s doing this, or – you know, not too many details. You need someone just stay the way he is so we can always have something different to talk about I suppose. And it is supportive, always like he says, have faith, she’ll be fine.
Marlene: In terms of coping, myself, over the years, yeah, it’s very up and down. Scott keeps me going because he is a positive and happy person so as long as he’s doing well, we’re all doing well as a family, basically. But I find talking to like-minded people, I do have another couple of women that I’m friends with who have kids with different things going on and we met through school, and we’ve become friends so just going out for a coffee, and we can talk to each other and we can understand what each other’s saying and I find that really good. But trying to take a bit of time out for yourself too, and it might just be going to have a cup of coffee or a browse around the shops, or just sit and read a book and have a cup of tea. Just stop yourself and stop your mind racing. If you can. And take a little bit of time out. And I think counselling for yourself too, if you need it. It’s very, very good, very helpful, just to talk things through with someone from outside.