Kate talks about parenting a teenager with a chronic health condition

Kate helps Rosie manage Moebius syndrome along with regular adolescent challenges and changes by just letting the changes take place.

‘Parenting a teenager with a chronic condition requires lots and lots of patience, in both directions’, says Kate.

For Kate, making time to listen is very important. She finds that her car journeys with Rosie are an especially good opportunity for talking and listening.

Rosie and Kate communicate well and negotiate Rosie’s ongoing health care each time something changes. For example, there have been practical changes to daily medical care – like looking after an ileostomy – which she and Rosie have learned to do together.

And when Rosie shows that she’s ready to start taking on different aspects of her own care, Kate helps Rosie do this at her own pace, which isn’t always the same as the pace set by hospital staff.

‘It’s her body not mine or anyone else’s’, says Kate.

At times Kate has found parenting a teenager with a chronic health condition really tough, especially when Rosie is in pain. She’s also found it hard watching Rosie miss out on what other teenagers are doing as part of normal teenage life.

Kate also says it’s difficult maintaining her own friendships.

‘There have been long spells where I just seem to drop off the planet – for example, when I’m in hospital with Rosie or home rehab and I just don’t have the time for a coffee or a movie or to go to that BBQ’, she says.

This means Kate has become very aware that parents in her situation need to look after themselves and find time to recharge their own batteries.

Kate sees herself not only as an advocate for Rosie but a ‘life coach’, particularly as she helps prepare Rosie for the transition into adult health care services. ‘I will spend time with her explaining about managing her own doctors’ appointments’, Kate says as she thinks about the changes ahead.

Kate admits that she has some mixed feelings about the focus of adult health care services and how Rosie will adapt.

For example, Kate says, ‘I’ll need to spend some time showing her practical things that are done differently in adult hospitals. She’ll also have to bring a lot more of her own activities to hospital as there will be no Livewire, Starlight Room, Clown Doctors, Wednesday Dogs, Petting Zoo or Hospital School!’

Teenagers with chronic health conditions or disability will eventually have to move into the adult health care system. This is called transition. Transition to adult care works best when you and your child plan it and know what to expect.

Moebius syndrome and Rosie

Moebius syndrome is a complex disorder involving multiple cranial nerve palsies. It affects eating, drinking, sleeping, breathing, speech and facial expressions.

Throughout Rosie’s teenage years, Moebius syndrome has also affected her bladder, bowel and respiratory system. As a result, Rosie has been through numerous medical interventions, including 56 hospital admissions and 12 surgeries.