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Support for parents of seriously ill children

These days may feel like the longest of your life. They may also feel like a waking nightmare, one from which you hope you’ll soon wake up from. Read on for tips to help if you’re caring for a seriously ill child.

You noticed your taitamaiti / child wasn't feeling well, perhaps experiencing some pain and fatigue. A visit to your doctor and then a referral to a specialist in the hōhipere / hospital indicated something was wrong but a diagnosis of serious illness was more than you believed possible.

The truth has brought your world to a stop. The doctors are using words that are new to you and describing a disease that has always happened to someone else. You can’t stop wondering "will my taitamaiti / child die?"

Here are some things to remember right now:

  • The team looking after your taitamaiti / child will do their very best to successfully treat the illness and explain the benefits and side-effects. Try not to lose hope.
  • Take some time to sit down, read the information you've been given and begin the process of understanding what needs to be done.
  • Your whānau and friends are there to love and support you. Reach out to them.
  • You’re not alone: Kenzie's Gift is here to help you, your taitamaiti / child and whānau cope throughout this journey.

It’s normal to feel…

All the things. The following feelings and emotions may happen one at time or all at once. This is normal and OK.

Exhausted

Physically and emotionally. Tears may never be far away and some days you can hardly get out of bed. Be gentle on yourself and your tamariki / children. You’re going through an ordeal.

Frightened and anxious

Discuss your feelings during appointments at the hōhipere / hospital and ask for extra help and support if you need it.

A bit lost

The way forward is unclear, and life feels uncertain, like it’s on hold. Although life will never be quite the same, life before this diagnosis had structure and some of that can be re-established in this "new normal". Work together, be creative, think of ways to move forward with your whānau by involving them in the decision-making. You may need help from support groups so don't be afraid to access it.  

Guilty

Feeling guilty is normal - remind yourself that the serious illness wasn’t your fault and there’s no way you could have prepared yourself for it. You've done exceptionally well, caring for your taitamaiti / child and keeping the whānau going too.

Alone

You may feel you are the only mātua / parents and caregivers in the world whose taitamaiti / child has been diagnosed with a serious illness. You’re not alone, many others have walked this road before you. Your hōhipere / hospital social worker can help. Talking to those who have been there too and understand how you feel is really helpful.

These feelings should pass over time but if they don't and you or members of your whānau are not coping, please ask for help – talk to us or have a look at these support organisations.