The moment when grief begins

We all know that families who have a child with a terminal or life threatening illness must be going through an extremely difficult time. We understand that when a child dies the family are left facing a grief that many of us fear.

What many do not realise, is that for the families of children with a terminal or life threatening illness the grief does not start when a child dies. It begins the moment they first begin to understand that they may outlive their child.

From this moment, families are left in the space before the grief of death. Where the expectation is to hope and cope. This is quite a burden to carry while dealing with the feelings that anticipatory grief bring. Feelings of fear, anger, resentment, guilt and loss.

While trying to manage all of these feelings, and ensuring their sick child is well cared for, families may still need to work, care for siblings and try to live their day to day lives.

I am sure you will agree that this sounds overwhelming.

Some families find themselves in this anticipatory moment for years. It is exhausting. It is lonely. It is painful.

As a Rainbow Trust Family Support Worker I know the impact our support can have for families in this position. We are able to be with a family throughout their difficult journey, and work with everyone in the family in a way that is tailored to their needs.

I aim to be a person families can talk to about all of their thoughts and feelings, even the dark ones they think they shouldn’t express.

I know the importance of laughter, a much needed respite from their overwhelming situation.

I am keen to help with the little jobs that make their heavy load a little lighter. Collect the shopping while the family isolates, clean the house when parents don’t have time, give a lift to the hospital, play with siblings, help with benefits forms, an pick up siblings from school. Always reminding families that someone genuinely cares.

The occasional text to ask how their day went.

A cup of tea when emotions are high.

Facilitating difficult conversations.

Quietly respecting each family’s needs.

It is my hope that in doing these small things, I can help the loved ones of very sick children carry the difficult weight of anticipatory grief.

If you would like to sponsor a Family Support Worker to help them continue to provide vital support to families caring for a seriously ill child, please click here.