Grief after the diagnosis

When parents are confronted with the possibility that their child is suffering from a serious illness, a torrent of intense emotions, thoughts and behaviours are produced both in them and the rest of the family. The diagnosis is a time of uncertainty that creates much emotional suffering in the parents and the child. The distress can be even greater if there have been wrong diagnoses in the past.

The loss of important faculties that increasingly limit the day to day life of your child make you grieve for each one lost.
It is possible that the first reaction is one of being stuck, with the family feeling incapable of making a decision. This may be accompanied by anguish and anxiety over the future and the fear of the unknown and of death.

Also there may be a denial of the situation which at first can act as a defence mechanism to cushion the shock caused first by the diagnosis and then by the terrible prognosis.

Another common reaction is anger. Once the diagnosis is accepted, the parents may begin asking themselves, “Why us?”
There may also be reactions of intense sadness associated with the loss that illness brings.

There are so many different reactions and ways of dealing with it as a family.

Accepting the diagnosis of Gliomatosis cerebri can cause grief due to the foreknowledge that your child’s loss of functions will limit the daily activities that are vitally important to a child, such as eating, sleeping and playing, you are aware that their life will, ultimately, be cut short.

When parents are confronted with the loss of a child they lose an important part of their own lives. There is no comfort or consolation when confronted with this. Nothing anyone tells you, nothing you hear helps you. You only want to be with your child, feeling them close to you. Their absence makes their presence the only thing you desire. So much left unfinished. Their life had only just begun. With them they took games played together, secrets shared on the bedside, quarrels over the dinner table, dreams, nightmares, and also hopes and aspirations for the future.

There are so many things that you wanted to share with them. It doesn’t matter how much time has passed since they are no longer here, it doesn’t matter how many people there are around you that love and cherish you or if they were your only child or whether you have more. The death of a child represents the loss of the present, of the future… and of experiences that you weren’t able to enjoy.