It’s important to acknowledge that long-term illness and disability can be an incredibly stressful and challenging thing for children, parents, and families to go through. While it’s important to support your child and their changing feelings around their illness or disability, it’s also important for parents and carers to be able to talk about their feelings in a safe and comfortable space.  

Common thoughts and feelings might include:  

• intrusive thoughts  
• thinking you are a bad parent  
• wanting to assign blame  
• feeling jumpy, on edge or anxious  
• being more protective  
• wanting to avoid or not talk about the illness or disability  
• helplessness and loneliness.  

These feelings are normal, and they can be worked through by talking with someone you feel safe with, like:  

• a friend  
• a partner or family member  
• your local doctor  
• a psychologist.  

Working through these thoughts and feelings is an important part of practising self-care and finding good support to help you manage.  

A good support network can be a valuable resource that can help strengthen families, link you in with resources and funding, and help you adjust to change. Who you reach out to can depend on where you live, your family structure and the services local to you, but may include:  

• family  
• friends  
• your local doctor  
• a psychologist  
• hospital support services  
• not-for-profit support organisations  
• local support or parent groups.  

Some families find being involved with parent support groups very useful and a helpful forum for gaining skills and sharing experiences. Generally, it is a good idea to avoid any larger or generalised Facebook support groups that haven’t been reviewed or recommended by people or health professionals you know. This is to make sure you have access to good information and support.  

It’s easy to feel lonely and isolated during these periods, so making sure you have a friend or health professional to talk to is important.   

Speak to your child’s doctor or treating team for recommendations about support groups and services that are right for your family.   

Ask your local doctor about organising a mental health plan for some extra support and access to subsidised psychology appointments.

For some people, self-care is a word that relates to things like a massage or a visit to a salon. For others, it is as simple as a hot shower or a walk through your favourite shop.  

Self-care is different for everyone, so it’s important to take some time for yourself and think about what your interests are, what gives you a sense of calm, and what can bring you a bit of peace during a difficult time.   

Research has shown that people who make time for self-care outside of their role as a parent or carer have higher levels of resilience and have a longer-term ability to adapt and cope with difficult life changes.   

Some simple, day-to-day self-care exercises can include:  

• making sure you have a shower every day  
• buying a new or favourite tea flavour and taking 15 minutes in the afternoon to sit and enjoy it without your phone  
• pick a new or favourite TV show and enjoy one episode per day (try to resist the urge to binge-watch)  
• try some breathing exercises like breathing in for 4 counts and breathing out for 4 counts  
• listen to a new podcast  
• text, chat or call a friend about something unrelated to your child’s health or disability  
• scheduling a coffee catch-up or sending a funny meme can be a good way to get your mind off things.  

When your child is in hospital, speak to their nurse or treatment team when you need a break or a breather. They are always happy to support your own self-care and can encourage you to get out for a quick walk around the block or even just grab a coffee.  

It can be difficult and expensive to access nutritious food that will keep you full and energised when you are in the hospital or don’t have the mental energy to plan, shop and cook for your family.  

Try to keep low-effort, nutritious, and easy-to-eat snacks on hand to manage your stress and stamina levels. These can include:  

• carrot or celery sticks and dip
• individual yoghurts 
• fruit that comes in its own wrapper – like oranges, apples, mandarins, and bananas  
• muesli bars  
• popcorn  
• hard-boiled eggs  
• nuts or trail mix.  

Batch cooking and freezing meals can also be a great way to make sure you have an easy, nutritious lunch or dinner choice on hand and an opportunity for other kids, family members, or partners to contribute to meal organisation.  

Try to limit caffeine like soft drinks and too many cups of tea or coffee within 6 hours of any sleep time and keep a large water bottle on hand to help keep you hydrated throughout the day.  

Sleep can be a bit more challenging to manage, depending on whether your child is in hospital or not, and what facilities are available for parents and carers.  

Sleep hygiene is important but can be difficult to stick to when your mind is racing.

Try strategies like:  

• being consistent with the time you get into bed and the time you wake up if possible  
• remove electronics from your bedroom or at least away from your bedside, like phones, TVs, and computers for an hour before sleep  
• trying to make your environment more comfortable by treating yourself to some new sheets, comfy pyjamas or even a diffuser and some essential oils for aromatherapy  
• using earplugs, a sleep mask, or blackout curtains  
• playing some white noise, sleep sounds or podcasts to help you drift off.  

If you enjoy exercise like running, bike riding, swimming or even taking classes, it can be good to keep it up during periods of stress both for self-care and to keep you healthy.  

If you struggle with exercise or motivation to move, try including more incidental types of exercise. Low-impact, comfortable movement can help you reduce stress levels and improve your mental health. Try things like:  

• taking the stairs instead of the lift  
• parking slightly further away from an appointment and walking the difference in distance  
• taking a walk on the treadmill while listening to a podcast or streaming your favourite show  
• going for a walk outside while listening to music or a podcast  
• finding a simple step or walking workout on YouTube, set to your favourite music
• letting yourself “get lost” on a walk through a new park, beach, or even shopping centre.  

Children with long-term illnesses and disabilities have many strengths and abilities. While there are down periods, there will also be many periods of joy and achievement, so it’s important to celebrate the wins of both your child and your family.   

Keeping a positive mindset can be easier said than done, so it’s good to engage your child’s treatment team in updating you on any positive developments or milestones and making sure you continue to celebrate joyous events like:  

• dress up or theme days at the hospital or school  
• relevant religious holidays and celebrations  
• days of recognition, like Mother’s and Father’s Day  
• birthdays.  

Don’t forget to celebrate yourself, and all the hard work you do as a parent and carer. You have your child in some of the best care in the world and are discussing their progress regularly with qualified health professionals. There is no better place for them.  

Having a good understanding of your child's specific health condition or disability can help you manage feelings of stress and anxiety by creating a sense of control and expectation.  Being informed reduces fear of the unknown. It can help you explore options and be a good advocate for your child and family. 

Getting good quality information can be difficult, especially when dealing with Google searches and Facebook groups. You can make sure you are accessing high-quality health information by:  

• having consistent, ongoing contact with your child’s treatment team  
• making use of hospital resources like social work and child life therapy to help you feel supported and informed  
• accessing Kids Health factsheets and information on the Sydney Children’s Hospital Network website  
• asking all questions that come to mind.  

Remember, there is no such thing as a silly question.  

Being an advocate for yourself and your child can include:  

• telling staff about your child’s strengths, skills, and personality, along with what makes them feel comfortable and safe  
• asking staff to show you and explain different day-to-day procedures before they happen  
• asking staff to involve you in things like feeding, bathing, and keeping your child engaged throughout appointments or hospital stays  
• creating a sense of home in the hospital, like bringing in pictures, toys, and comfort items to make the environment more relaxing  
• giving your child a source of calm and strength through difficult periods.  

When you show self-care to your child, you are showing them how to look after their physical and mental health and wellbeing.