How would you cope if you were told your child was dying?

How would you cope if you were told your child was dying?

Being a parent is already a challenging journey on its own. Being a parent to a child who has been diagnosed with a terminal illness is a frightening and seemingly isolated journey that no one can ever truly be prepared for

Imagine, up until now the words ‘terminally ill’ have never crossed your mind, but suddenly you are faced with the
terrifying and devastating realisation that you may outlive your own child.

Coming to terms with the fact that your child will not live a normal life is nothing short of traumatic. From the moment of diagnosis, you are in a constant state of self-accusation and the feeling of guilt inadvertently looms over you.

How do you begin to navigate through parenthood when every moment of your life is now consumed by medical appointments, specialist health care regimes, and learning about complex medications?

The emotional pain and stress associated with caring for your child is just as difficult as caring for their physical symptoms. Your one goal is to make sure that they are not in pain. It’s a 24-hour role and things are never simple or easy.

As a parent, it is not just you who is now facing these challenges, but the siblings, grandparents and relatives of your child who are also deeply affected. Life has changed for everyone and it’s easy to feel completely out of your depth.

That’s why Rainbow Place, Hospice Waikato’s specialist palliative care service, offers a professional counselling service for both the child who is facing an illness and their family/whānau.

In these difficult times, it is the ability to express your personal fear, anxiety and stress to a counsellor that slowly begins to unburden you and helps you on your way to building strength and resilience.

Suddenly, you are not alone in your journey. Rainbow Place is there through the good and the bad times, to walk beside you as you explore the emotional, social, spiritual and practical thoughts and feelings that come with caring for a dying child - to support you through the ups and the downs, and help you make every day the best it can possibly be.

It is a free service that offers a safe environment to cry, laugh, talk, or say nothing at all. It is a phone call on those days when you just can’t leave your house and face the world. It offers the tools you need to harness your own resources, wisdom and strengths so you can find answers to the questions that weigh so heavily on your shoulders.

It’s a channel for siblings to explore and understand what it means to have a brother or sister who has different needs to them, and to express themselves through music and play.

And when your child reaches the end of their life and everything seems to fall to pieces, Rainbow Place is there to support you and your family on a different journey that is grief and loss.

We love the support our daughter and our family get from Rainbow Place, especially the music therapy with Nolan. We love how he will come to us no matter where we are - in our home, while Zaynab is in respite, or when she is in hospital getting treatment. We feel very blessed,” says Zaynab’s father, Ali.

- Rachael Bish,
Hospice Waikato

How you can help?

Nothing changes your life like finding out your child has a terminal illness. At Hospice Waikato we have qualified counsellors to support family members who are caring for a terminally ill person and the devastating loss of a loved one. Please help us continue to provide this necessary support to our patients and their families by helping us fund a counsellor’s salary.

Please click here to make a donation today.