Bereavement: End of Life Care and Beyond
Retinoblastoma destroys family life and the joy of new parenthood, crushing dreams for the future.
The loss of a child to retinoblastoma is an almost unimaginable agony. For many families, it is deepened by knowledge that earlier treatment could have saved their child’s life.
Even though the loss is anticipated, it is still often a mind-numbing shock.
As well as profound sadness, parents and siblings may feel anger, guilt, fear, loneliness, apathy, despair, and a complete loss of control.
In the very first days of bereavement, you will be busy organizing your child’s funeral, finding creative ways to celebrate her life with family and friends. Your support community will surround you with love in these first days, weeks and months, but gradually they will move into the background as life goes on.
Grief can drain all colour from the world, setting us adrift in a dense confusing fog. Feelings come in waves that engulf and recede with no rhyme or reason. As time passes though, the ocean of emotion begins to settle. The fog slowly lifts and life begins to ebb and flow to a calmer rhythm.
Working through grief takes courage, patience and love, especially as a family. To find joy in the memories you have created together, you must first overcome the devastation of lost dreams. You must all find ways to share your emotions and respect one another’s different coping styles.
We grieve because we love. Moving forward without your child may seem impossible. You have loved with your entire heart, and the loss you endure is like no other. Yet deep love has woven your child’s life into your own, and into the lives of your partner and surviving children.
Though you will gradually rejoin the mundane world, returning to school, work and social life, your child will remain a part of who you are, as an individual and as a family. The loss of your child will have changed you profoundly, but you will find joy again in treasured memories, in loving your remaining family, and in life itself.
You now know time together is limited. You must restructure family life around the agonizing knowledge that your beautiful child is dying, but you can still hold on to hope.
Planning this service is your final act of caring for your child, and gives you an element of control in a time of deep loss and confusion.
The funeral provides an important opportunity to say goodbye and celebrate your child’s life in a tangible demonstration of love.
Though you may have been united in fighting for your child’s life, finding your way through this horrific loss is a very different and highly individual journey.
Siblings often do not receive necessary support to help them cope with strong emotions. They may feel neglected, and believe their grief is unimportant.
In time, the agony of your grief will become less intense. Slowly, you will find yourself smiling more than crying when you think of the child you have lost.