Here are a few tips for people who find themselves in the understandably horrible situation of parenting a child who is dying. The situation is a heart-wrenching and complex one so these tips are, of necessity, simplifications. Hopefully, they will be somewhat helpful none-the-less.
Among the most unarguably anguishing experiences a parent can have is that of surviving their own child. Although it is a painful and seemingly unnatural thing to happen no matter what the respective ages of the parent and child, the pain and angst engendered is particularly acute when the child is young.
Add to that, a situation where the death is known to be imminent due to certain illnesses, diseases and biogenetic misfortunes, and the job of parenting a young person most parents expect to grow into an adult person, evaporate and cloud the parenting field of vision in a way that is both excruciating and understandable.
None-the-less, as difficult as it may be, even children who are terminally ill require parenting and love, understanding, support and discipline that are key components of a task that is challenging under even the best of circumstances.
The temptations and associated risks for loving parents faced with this heart-wrenching situation are understandable, especially if the child is suffering in the process.
The first, most frequent and likely most critical risk is that which stems from the parent being pulled by their heart to indulge the child in any way possible because they know that the opportunity will be cut short prematurely. Children, no matter how young or how ill, have a need to learn right from wrong and this task most often falls to their parents. This distinction is commonly expressed through understandable rules, appropriate expectations and fair consequences.
In a world where anything a child, ill or healthy, does is accepted, no discriminatory learning occurs and basic socialization skills are left, unincorporated, by the wayside. This is not doing any child a kindness or a favor.
If anything, by the time most children are three or four years old, they know that they “should” be held accountable for their actions and if they are not, this may contribute to their feelings of being abnormal and different. This is not the feeling we want the child to have.
On the contrary, most parents would want their child, even one that is facing a terminal illness, to have as normal a life as is possible for as long as they can have it. Normal expectations and discipline are part of what normalcy is comprised of … and children know it.
The second, and perhaps equally powerful risk, is that of the parent succumbing along with the child, to the dark world of hopelessness. This is where the aforementioned notion of the “therapeutic lie” comes in. In situations where hope seems to no longer spring eternal; it is often (but not always) an expression of loving kindness to simply lie about it.
Even when all the information available to the parent says that all hope is lost, conveying that perspective to a young child can be a devastating reality that will only serve to more quickly sadden and weaken the suffering young person. Parents provide love and care. Good parents also provide some hope. Is this a suggestion that we be untruthful with the child? The answer is sometimes “Yes!”
The third and final major risk I will discuss here is that of the parent becoming so deeply depressed by the child’s situation, that the child can see it. Most parents have come to appreciate how deeply and accurately intuitive our children are, even when they are quite young.
The natural proclivity for most children and the developmentally appropriate positioning of toddlers is to hold themselves responsible for nearly everything that goes on around them. This includes, of course, the moods and behaviors of their parents. Sometimes called “magical (or primary process) thinking,” this normal way of kid thinking can bring on deep depression if it is not magical at all, but quite real.
There are ways of being truthful without telling more than is necessary, especially to a child. There are also times where being blatantly truthful is inappropriate and perhaps even cruel.
Every person, family and situation is unique and these suggestions may not sound or be correct in every individual case. That being acknowledged, more often than not, in my many experiences working with families where a child is suffering from a presumptively terminal illness, these three key notions are worth giving some serious thought to.