Meet our essential workers

For over 14 years I have provided emotional support, counselling and advocacy to families or individuals in a family whose child has a life-threatening condition or has died from one. I also train, support and supervise family volunteers and facilitate a range of group therapeutic programs for children, parents and families at Very Special Kids.

But right now during COVID-19 I have been supporting families with online counselling sessions and being with those that are at end-of-life in the Very Special Kids Hospice. The exceptional care these families have experienced and the opportunity to have the hospice and staff entirely to themselves has been unique. I believe it’s provided families with a haven at a time when the world seems to be a  little unsafe.

End-of-life care at Very Special Kids means hopefully that families can be together in a supportive environment where they can focus on spending time with their child without the worry of managing the
medical aspects of their child’s care. It allows for families to create special memories in an environment of love and support. I think COVID-19 is adding to the sense of isolation many of the families we work with already feel as a result of having an unwell child. For families with a vulnerable child they have been forced to make choices especially around care and support in order to protect their children, but this comes at the cost of bearing the care burden alone. They, like many, are also juggling having siblings at home and educating them whilst caring for an unwell child. I think for many bereaved families it has heightened their grief, whilst many have also acknowledged that nothing can be worse than when their child died.

I have learnt that ‘normal’ death and dying does not stop because the world is partly shutdown due to a pandemic. Death and dying during a time like this can add additional stresses to the families we work with who are sadly going through the death of their child. The additional pressures surrounding planning a funeral or memorial are a big challenge with restricted numbers and locations. For some the thought of a small funeral may be appealing but for others it can be devastating not being able to give your child the farewell you wish to. The option of delaying a memorial until the restrictions are lifted is a possibility but a funeral can also be a stepping stone to the next part of the grief journey and the absence of this may impact how families cope during this time.

I think supporting families at the end of their child’s life is such a privilege. I know I cannot prevent the inevitable pain that a child and family experience from the diagnosis and subsequent journey and death of their child. I only hope that the support Very Special Kids helps the pain to be more manageable in some meaningful way.

Please donate to ensure we can continue to provide this essential care to families.