Parenting Children with Health Issues

If you ask me whether I've seen a particular adult movie, my response is likely to be "No." But if you ask me about any kid movie, I could tell you about the characters, plot, and punch-line all in one breath. That's how it is when you live with children.

So, it shouldn't be too surprising when I tell you that it was in the Disney movie Finding Nemo that I saw a great metaphor of what it is like to live with kids with chronic illnesses. You see, both of our children have cystic fibrosis so I know what it's like. And, like the clown fish dad on Nemo (named Marlin) I have journeyed from the place of over-protective and "worried about everything" to "still worried about everything but handling it a lot better."

I suppose there is always room for improvement in most everything in life, especially parenting. The problem with parenting is that we may not realize how much improvement we really need until it's too late (ie: my teenagers become hellions and I wonder what happened). The problem with parenting kids with chronic illnesses is that "too late" doesn't mean just a dented car or some experimentation with booze or sex- it can mean the difference between life and death. The stakes can be so very high!

The struggle to resist the powerful parental impulses to rescue, hover and over-protect are played out in Finding Nemo. The paradox is that it is in letting go of the intense need for protection that actually gives a child the freedom to become a hero and to unlock the greatness of spirit inherent within those who have learned to cope well with suffering. Just like Nemo!

We begin Nemo's story with a happy little fish couple embarking one of life's greatest adventures- having children. Then, tragically, the mommy fish and all eggs but one get eaten by a bigger fish. Here, the real story begins with Nemo and his dad "picking up the pieces" of the initial trauma. To make it all the more poignant, Nemo is born with a deformed, or "lucky" fin. So, here we have initial trauma and physical disability- a perfect recipe to create an over- protective, hovering parent who is understandably oozing with concern for his son's welfare. He limits, rescues, protects and controls Nemo; his expectations are low for Nemo's ability (due to his disability); and he does not trustNemo. He is worried about every detail in Nemo's fishy little life. In fact, Dad's life completely revolves around Nemo. Sound familiar?

The first big event in Nemo's life is his decision to rebel against his father's controlling, over-protective nature. No surprise, there. Nemo has no choice but to exert his independence in way that opposes his dad because he has never had the freedom to make any decisions for himself. So, he defiantly touches a boat just to prove to dad, friends, and himself that he can do it. And, in doing so (if you haven't seen the movie), he gets swept up by a scuba per and appears destined to become a part of a fish collection in a dental aquarium.

How many kids with chronic illnesses have no choice but to rebel against parental authority by refusing to comply with medical requirements? Children, just like adults, have a strong need for control. Wise parents share the control by giving their children lots of choices. For example, a parent might say, "Would you like to do your breathing treatment before or after your homework?" or "Will you be doing your insulin shot in five minutes or ten minutes?" or "Do you plan to take your pills with juice or milk?" A lifetime of small choices creates a savings account of shared control that can be "cashed in" when it's time for the big choices of life- like whether or not to live.