Dearest, you’re dying

A children’s hospital is an otherworldly place to be. Really, any hospital is strange place for me — a society separate from the outside world in which more time is always desired but almost never obtained. More people enter hospitals than exit. Hospitals are powerful, life-shaping places.

Many people do not necessarily associate them with childhood, but hospitals play a huge role in how a child’s life can be experienced, especially if that child has a terminal illness.

Many parents highly debate telling their children if they have been diagnosed with a terminal illness, and they are allowed to make that decision until their child is no longer legally a minor.

But should information like this be kept from a child? Not only does it directly impact the child’s life, but also fully explaining to a child that they are terminally ill helps them to make sense of what is happening in the world around them.

During this time, they will more likely than not be making numerous trips to the hospital, meeting doctors, and taking treatment options and medicines to prolong their life and alleviate symptoms. If a child is only told that they are a little sick, or that they are just “sick” — the word their parents also use when they have the flu or a cold — then they will not understand the seriousness of this illness being grouped under the word “sick” or why they need to go to the hospital so much.

All humans show their grief and other strong emotions in their appearance even if they will not speak about it, and parents are no different. The grief associated with the fatal illness of a child will present itself, even if a parent tries to hide it.

Children’s levels of understanding are often underestimated based on their age and experience. It is very confusing for a child to notice the taciturn, overly watchful and tired strain that grief and stress outwardly manifest in a human body within their own parents.

They understand that their parents are upset and that something is seriously wrong — but when they ask their parents, the problem is denied, avoided, and nothing is explained. Therefore, kids can be left feeling guilty for potentially being the reason their parents are upset — but they are confused as to what they are doing to make their parents feel this way. This leaves children in a state of guilt and confusion when they see their parents crying and outwardly presenting grief. Lack of honest communication between parents and guardians and their children leads to that child being aware something is wrong and yet being unable to find any agency in helping to resolve the problem.

The terminal illness of a child cannot ever be treated as separate from a child. Although a child does not lose their separate identity from an illness or their life before or outside of it, they cannot be kept apart from information about their illness. When that happens, a child is stripped of all agency regarding their own life. Although they may not understand the decisions made by doctors and parents over various treatment types and surgical procedures, every person, no matter their age, should be aware of their life expectancy once it is decisively cut short.