In a comment following a piece I wrote on Parenting a Terminally Ill Child, my fellow contributor, contributor S. Maven suggested a piece dealing with the core issues in parenting a chronically ill child. I thought it was a good suggestion and here it is.
Human children are born highly vulnerable and completely dependent under the best of conditions. When their young beings are beset with an illness that is chronic in nature, the parents often struggle with just how much to shelter and protect the child as s/he grows and how to balance that loving impulse against their understanding of the child’s growing need for independence.
As a clinician who has seen thousands of children and families over nearly forty years in practice, I have noted that oftentimes parents of children who suffer from chronic illnesses often have two powerfully important things in common. These things effect what they do and how they do the things they do as parents.
1) Although rarely warranted, the parents tend to feel some sense of responsibility for the child’s infirmity. They after feel badly that they had not seen something sooner or done something differently that would have resulted in the child being healthier. “If only I/we had …” is the opening line of this expression of guilt that frequently is part of what the parents have to say when I talk to them.
Parents are also apt to blame themselves for passing along to the child some disorder that existed elsewhere in their family. After all, about one-half of a child’s DNA does, in fact, come from each parent.
2) Parents of children with chronic health conditions are many times overcome with their feelings of helplessness. They are the parents and feel that they should know what needs to be done to make the child feel better and then, of course, they expect themselves to do it.
When you put #1 and #2 together, the result is sometimes parents prone toward overindulging the child to, somehow, compensate for their feelings of responsibility and of helplessness.
By ‘overindulging’ I mean exactly what it sounds like. Always letting the child have their way, never telling them “no” and gratifying each and every demand, desire, whim and wish are the most evident examples.
So, what’s wrong with giving a chronically (but not terminally) ill everything they can think of, want or ask for. What’s the matter with letting them do whatever they want to do whenever they want to do it? The answer is, I expect, suggested by the tone of the questions.
Unless the goal is to raise a child who grows up to feel omnipotent and entitled, pretty much automatically, to have any expressed wish gratified immediately if not sooner, this compensatory overindulgence will, in all probability, turn out to be a terrible mistake.
Further, by the time most children are four or five, they know and are coming, to one degree or another, to grips with the fact that adults control the world. Placing a young child in the driver’s seat, especially at a very young age, tends to breed what folk-wisdom characterized as “being spoiled.” Kids who learn to always expect to get their way are being ill prepared for the reality of the rest of their lives.
The experience leaves them feeling not normal, and that can’t be a good thing. No matter what illness or infirmity a child may suffer, a thoughtful parent wants the child to experience life as normally as circumstances permit. I am reminded of an old episode of the TV show, “Malcolm in the Middle” where their friend Stevie, who has severe asthma and is wheelchair bound, gets his parents to agree to let him sleep over at his friends by saying, dramatically, “It would make me feel normal.”
They cave in immediately, and as Stevie wheels out of the room he grins broadly and looks directly into the camera, saying, “Like shooting fish in a barrel.” It was a funny scene in a TV sitcom, but the humor would wear off pretty quickly in real life.
Keeping the child’s life as normal as is possible is the healthiest goal for a parent to have in mind. Allowing the child to learn to use their condition to remain an unnatural center of the family universe is probably wrought with more problems than it is apt to bring satisfaction, in the long run, to anyone who live in the home – The child included.