Monthly Archives: August 2020

In My Shoes – a family support practitioner’s understanding

By Pauline Hammond, Grampians Region Family Support Practitioner

For those of us working in paediatric palliative care, the statement “You must be a special type of person to do the work you do”, is praise that we’ve all received, somewhat awkwardly, at one stage or another.  Whilst the work is undeniably privileged, emotional, and rewarding, what we do is not heroic.  It’s the brave families who invite us in, and trust us with their vulnerability, that are the heroes of their stories.

When someone asks me what I do, my answer is a simple one; “I listen to people who are hurting, and bear witness to their pain”.

For the families I have supported, this is what my shoes feel like.    

I sit in the space you make for me.  A little uncomfortably, at first.  Your pain squishes us both, pressing from the outside in, and from the inside out, leaving little room for false pleasantries.  Your truth is palpable, tenderly touching me, as you share, layer upon layer, your precious story.
A child…… a life…… a diagnosis…… a death……
I hear you.

 I hear the words that you cannot speak, and I understand that the language of grief is a lived experience.  After the storm, the subtlety of grief can be easily missed.  The gulp of air, when you forget to breathe.  The booming heartbeat, that renders you temporarily deaf.  The shadow drifting into the path of your gaze, weighing heavily, as it snags in your head, and your feet.
I see you.

For a while, hope seems elusive.  Meaning is intangible.  Upside down becomes the right side up, and fears of falling are real.  The world becomes nonsensical, unthinkable, unimaginable.  The extent of your broken heart, inconceivable.  And the grief…the grief is just too big.
I am here with you.

I hold your hope, for safekeeping.
I am present.
I will witness your pain, validate your agony, and share the space you make for me.
I hear you.
I see you.

Death and Dying, let’s talk about it

Dying To Know Day (8 August) is an annual day of action dedicated to activating conversations and community actions around death, dying and bereavement.

Very Special Kids is using this day as an opportunity to open up the discussion of how we, as a society of many cultures, faiths and beliefs talk about the inevitable, death.

We are an organisation that sadly witnesses the untimely death of children, which exposes us to the realities in life and to the often taboo topic of death. It is a difficult topic, no doubt about it, but the fact that it is difficult is the very reason we need to talk about it. We’ve launched our own video in the hope it will encourage society to talk openy about death, dying and grief, which is something that will inevitably affect us all.

If you’ve lost a loved one, we’d love to hear your story, or if you’ve got a question you’d like our team to answer, please use the form below to get in touch.

Let’s talk…

First Name*
Last Name*

Pandemic provides opportunity for new programs

By Shari Manley, Child Life Therapist

During times of isolation when we are physically distant from family and friends there is nothing more comforting than a smile and warm welcome from a familiar face. Pip and Shari know first-hand the positive impact of seeing a friend and have spent the past months in their own homes working together to create new and innovative programs to connect with VSK children and their families.  The first of these is The Zoom Room, a therapeutic space for fun and engagement that utilises the Zoom platform. Pip and Shari facilitate twice weekly story and music sessions, that are carefully planned with open ended and inclusive experiences for people of all ages. The flexible and interactive format has enabled the growth and development of the program over a short period of time to include family support practitioners, volunteers and hospice staff alongside VSK children and their families.

The second new method for service delivery has been inspired by work in the Aged Care sector where the physical barrier of windows has been utilised to unite rather than separate people. Pip and Shari were excited to discover new ways of delivering and jumped at the chance to try. The result has been the introduction of Window Therapy sessions, delivered onsite at the Malvern Hospice once a week. Working outside the Hospice and 1.5metres apart, Pip and Shari deliver story and music experiences. These sessions are also carefully planned with a fine balance of energetic engagement and relaxation, paying close attention to the interests and response of the child. The hospice staff are supported to work alongside the children and the result is a collaborative creation of musical and sensory delight. Pip and Shari even plan to make the most of early sunset and provide the children and staff with a twilight to night session using light and sound to create a magical and immersive experience.

Not to be defeated by the restrictions and impositions of COVID-19, Pip and Shari have embraced new ways of working; encouraged and sustained by the increased connection to community. If you would like to join the online Zoom Room sessions, they will be held Monday and Thursday throughout August at 11am, access the Zoom App with these meeting details – ID:945 13381 1444      Password:CLT123. Everyone is welcome and there are no prerequisites or criteria for joining. See you at the next session or contact Pip, Music Therapist ( and Shari, Child Life Therapist (  to find out more.