The power of hope

By Angela Flood, Family Support Practitioner at Very Special Kids

Have you ever stopped and imagined what it might be like for a parent to hear the words ‘your child is going to die’. Have you wondered what those earth shattering, heart breaking, incomprehensible words might do to them physically, emotionally, mentally? I have not experienced this, but in over 12 years of working as a Family Support Practitioner at a children’s hospice I have encountered dozens of parents who have heard those words and been forced to witness them come to life and watch as their child has succumbed to their illness.

Working with so many families facing this difficult journey has taught me a lot about the importance and the power of hope.

Hope in the context of those six words ‘your child is going to die’. Where is the hope in that I hear you wonder?

We often here the phrases ‘there is no hope’, or that the situation is ‘hopeless’. These phrases only lead to a sense of defeat, failure and for some guilt, that they have been unable to save their child.

But hope is in fact everywhere…

  • Hope that miracles happen and that maybe their child may be the next recipient of a miracle. That the latest trial, research or medical discovery will save their child.
  • Hope that the doctors have it all wrong – the diagnosis, the prognosis, the doom and gloom – they must be wrong right?
  • Hope that whatever time they might have left with their child is full of wishes and dreams that come true – squeezing meaningful moments of life into whatever time they have been estimated or promised to have.
  • Hope that they will have the support they need for them, their child and their other children as they face the unimaginable.
  • Hope that their child will not suffer in the dying process and their death will be a peaceful one.
  • Hope that their final goodbye is one that honours them in the way they deserve and in a way that brings some sense of comfort to those around them.
  • Hope that after the death of their child they will be able to survive, that the heartbreak whilst a forever heart break will not take them as well, hope that they will be able to go on.
  • Hope that others around them will understand that they are changed forever by the loss of their child, and that sometimes the pain will be as raw as it was the day those words were first spoken and the day they watched their child die.
  • Hope that their child will not be forgotten, that their name will be spoken and that the legacy they left behind will continue to influence those touched by their life and their existence.

As a Family Support Practitioner I believe, a significant part of the role we play at Very Special Kids is about helping families to find hope. This hope may change over the course of their journey, but ultimately hope is what allows them to get out of bed each day and face not only their child’s life and death battle, but their own battle of grief and loss.

By helping parents find hope in a sensitive and timely manner, we are not diminishing their pain or playing down the loss they are faced with, but we are empowering them to find their reason for going on. We are empowering them to still feel like they can make a difference to how their child’s remaining days may be. I have born witness to hope in various situations that remain encoded in both my head and my heart.