Where’s The Instruction Manual for This Child? by Foster Cline, MD and Lisa Greene

Our child is born. We are excited and joyful. Then we get the diagnosis. We grieve. We might feel confused, overwhelmed, depressed or angry. Some of us reach out for support; others choose to be more private. Some devour information about cystic fibrosis and others choose not to. 

Our reaction depends on our personality traits, background, and culture. Eventually, we reach a point of acceptance. This doesn’t mean we are happy with the situation; it just means that we have come to terms with our new reality and have decided to pick ourselves up and move forward. 

This also doesn’t mean that we won’t sometimes be overwhelmed by emotions. Life has its ebbs, flows and even some whirlpools that threaten to suck us under. But simply going with the current often gets us to calmer waters. The routines of daily life have a way of taking over. 

Depending on the severity of your child’s CF, you are managing doctors’ visits, hospitalizations, insurance issues and multiple medications. You also have other responsibilities at home and work. But, with some organization and cooperation, family life can become enjoyable even with all of the demands that raising a child with CF can bring. People and families are amazingly adaptable. 

The problem is that it doesn’t take much to throw sand into the works and bring it all to a grinding halt: a long-term hospitalization, surgery, or adding another medical requirement to an already packed schedule. Life can get pretty stressful. With this extra stress comes more frustration! 

Parents can easily feel overwhelmed and wonder, “Where’s the instruction manual for this kid? What do I do now?”  When a child has CF, this question is harder to answer without some outside guidance. Love for their child, coupled with fear, guilt and worry cause parents to act in ways that are likely to put their child at risk.  

It helps to remember the ultimate goal of parenting: to prepare our kids for the real world. When we refer to a child “at risk,” we mean a child who is not capable of functioning in the real world with all of its choices and consequences. And when a child has CF, their choices and consequences can have life-altering results. 

There are no guarantees that our kids will always make the best decisions. However, using effective communication skills will increase the odds of raising confident, responsible kids with excellent coping skills; kids who take good care of themselves even when no one else is watching. 

Wise parents realize that the process of transitioning their child to adulthood begins when their child is old enough to throw peas from the high chair! 

Preparing our children for the real world is the biggest job we will face. That’s what parenting is all about: getting our children ready to leave home, to live independently and to know they are not at risk. We want them to look at the real world and say:

“I recognize this world! We practiced for it at home!”

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Excerpt from the booklet: Parenting Children with Health Issues and Other Special Needs: Love and Logic Essentials for Raising Happy, Healthier Kids by Foster Cline, MD and Lisa C. Greene  Available at www.loveandlogic.com.