“Seen, heard and understood”
When children say to me “it’s not fair” when they can no longer jump on a trampoline or ride their bike as they used to with their brothers and sisters because of their illness, it is hard to hear. They are right. Life is not fair; particularly if these illnesses are life-limiting and if they are faced with their mortality before they reach their teenage years. We as adults are struck with the helplessness in not knowing how to make a difference and the sense of futility in not being able to change the situation.
Children continue to teach us much when they are faced with their mortality. They have a gauntlet of emotions to face and work through. Children are not immune to the emotions that adults face as some people may think. They too experience a range of emotions such as anger, sadness, frustration, envy, helplessness, powerlessness, joy, and sorrow along with other aspects of grief.
At times children are misunderstood as adults feel that children lack understanding of what may be happening to them. But this is far from the truth as it is often the child with the illness that courageously looks at the path ahead of them and faces this head on. To be able to support a child it is essential to listen. When a 12 year old boy said that “the most important thing to him was to be listened to rather than adults trying to make him feel better”, he spoke an important truth.
When faced with our own helplessness as adults, we often think we are doing the right thing by protecting a child from what is happening. We do this in different ways, but at times it means that we are not being open and honest, or we stop listening to hear what the child needs. The most important thing for children who live with illness is that they have our time, our attention and that we listen to hear. This is what truly makes the difference in relieving their fears, anxieties and frustrations. This aligns with ‘The NZ Child Health Strategy’ (1998) whose principle is every child has the right to “be seen, heard and understood”.
Children deserve our respect. They do have the right to know what is happening to them, and we need to be open to what children who live with life-limiting illnesses have to teach us.