Parenting a CF Child: One Family's Experience

by Ann Robinson, Spring 1994

My husband, Rob, and I have two children, Clare, aged 20 and Carl who is 16. When our son, Carl was diagnosed with cystic fibrosis at age five weeks, my husband and I decided that it was important for him to be loved, to be as normal as possible, to be independent and to be happy regardless of his health status or life expectancy. Yet, even after taking child development classes and teaching for nine years, I can now say that parenting a child who has CF is the most difficult thing I have ever done.

Teaching About Consequences

Despite the increased responsibilities and burdens CF has brought in our lives, we found that in some ways raising a child with CF and one without is not very different. In raising Clare and Carl, we have tried to teach them that "actions have consequences" (parental limits) and that "causes have effects" (natural limits). If they choose an action, they must accept the consequence as well. When, for example, Carl doesn't take his enzymes, antibiotics, or aerosols, what will be the consequence? I will monitor his meds for the next 24 hours (parental limit) but he also may become ill (natural limit).

Why was it was harder to follow through on Carl's consequences than Clare's consequences? He already had cystic fibrosis and learning disabilities, which seemed to be enough consequences for one child. Although we did not directly cause Carl's problems, we did feel guilty about his having to deal with these difficult things and we were aware of wanting to treat him in a special manner. When we were less firm and did not follow through with consequences, his behavior became unacceptable, and we had to seek professional help when Carl was nine years old. After all, if Carl was rebellious at nine years old, what would he be like at thirteen?

Through the years the "actions have consequences" has worked and it has taught our children some self-discipline too. Let me give you some examples. One morning before kindergarten, Carl refused to put on his shoes and socks. He went to school in his regular carpool and was deposited in tears at the classroom door with shoes and socks in hand. He never refused to get completely dressed for school after that consequence. When Carl was in the fourth grade, he repeatedly missed the school bus. Ultimately, I charged him $ .50 to take him to school. (It was too far for him to walk or that would have been the consequence.) After that, he didn't miss the bus very often because he didn't want to pay me. Clare and Carl began doing their laundry in the 5th grade. If they didn't do their laundry, none of their favorite clothes would be clean for wearing the next day. After a few such incidents, they learned to wash their clothes regularly.

Maintaining this philosophy of "discipline with kindness" has lessened our parental nagging and anger while helping our children to become more self-reliant and organized. Of course, putting these ideas into practice hasn't always been easy. Our children had to be old enough to fully understand a rule, the consequences of breaking it, and be capable of obeying it. Once they chose to ignore a rule, the consequences had to be the same each time. We constantly reminded ourselves that since our children chose this course of action, they had also chosen the consequences. Our role was simply to see that the agreed-upon consequences did happen. By being diligent and consistent in our actions, Clare and Carl have learned to be responsible for themselves.

When we could not resolve our children's behavioral problems, we sought the help of a licensed child and family therapist and a licensed clinical social worker, who helped us understand our children's specific needs and offered positive parenting suggestions and behavioral guidelines. Carl's therapist also helped us prioritize Carl's daily needs, putting health activities first, academic work second and home chores last. This outside help was invaluable in improving our personal family relationships, as well as channeling Carl's rebellion into areas that would not endanger his health. For example, he has a messy room, plays loud music, is a fast driver, has grown a goatee and answers most parental questions with "uh huh". We have allowed him to choose his own clothing and hair style.

Dealing With Health Issues

Since diet plays such an important role in our family's health issues, we encourage good eating habits. Our children have always been good eaters of healthy food because that's all they were served. If they did not eat what was served for dinner, they had to wait until their next meal. Carl was encouraged to eat so that he could have muscles and energy for sports. Food supplements were used sparingly so that he would like and eat plenty of normal food. He has always eaten a large breakfast, two lunches (one at school and one right after school), dinner, and a bedtime snack. Carl eats the same school "pizza" lunch as his friends with a high calorie Ultra Fuel drink. This requires more enzymes but he is happy eating what his friends eat. Carl is now five foot eight inches tall and weighs 155 pounds.

Carl has given us many opportunities to test our parenting skills during the past sixteen years! We've let him be a normal boy. He has fallen out of trees which required stitches, he's had a bicycle accident that broke his arm, and he's been hit by a pitched baseball that broke his thumb. We encouraged his athletic endeavors by signing him up for sports, giving him aerosols and snacks before games, being "team parent" and by attending most of his games. Carl now rides his bicycle and does weight training every day. Exercise has helped him maintain his health and above average bone density.

Developing Independence

In Carl's situation, cystic fibrosis has enhanced his emotional growth because of how we have gradually encouraged him to move from total dependence upon us in his childhood to independence during his teens. We encouraged his natural desire for greater independence and self-reliance, in spite of the fact that he might become sick if he didn't take care of himself. We gave up some control so that Carl could become independent; we didn't want to be emotionally over-involved parents who refused to let go.

We got Carl involved in caring for his own health from a young age. The amount of responsibility was not as important as the feeling of control that came from helping to make decisions about his day-to-day life. Since he's been 13, Carl has been in charge of taking all his meds. When intestinal blockages or loose stools occur, we discuss cause and effect, encouraging him to think about what might have caused these events. For example, he has figured out that when he doesn't get 8-10 hours sleep, he gets sick. When he skips his evening aerosol treatment, he wakes up during the night wheezing. When he eats certain fatty junk foods, he has digestive problems no matter how many enzymes he takes.

On one Sunday last summer when Carl was 15 and I was in Indiana, he recognized that he was very ill, called the doctor, who made a heroic house call, and got himself admitted to the hospital. He is proud of his ability to take care of himself. When he started driving at age 16, he became responsible for ordering and picking up his own meds from our local pharmacy. He also began going to many doctor's appointments by himself.

To help handle the social pressures of feeling different, Carl attended CF summer camp for four years and he is now encouraged to attend CFRI's monthly support group for children, adolescents, and adults having CF. We have encouraged Carl to discuss cystic fibrosis with his friends, which has been a positive experience because he has been accepted in spite of being different. All of this has helped Carl focus on his similarities to other children instead of his differences from them, which in turn will help him handle the more intimate emotional relationships that he'll develop over the next few years.

Throughout Carl's lifetime, Rob and I have learned all we could about cystic fibrosis, and passed that knowledge on to Carl. We've organized and attended research talks and medical discussions at CFRI. We view and discuss the videotapes of these meetings with Carl. We have always been completely open with him about his disease and have told him of all the hopeful research that is being done. We've taken him to see the Cystic Fibrosis Research Laboratory at Stanford directed by Dr. Jeff Wine. We've told him that he must plan for his future so that he'll be financially self-supporting and able to care for himself.

Nurturing Ourselves as Parents

What have Rob and I done to take care of our own needs while parenting two children? We take time for ourselves. I am in a women's meditation group that has met weekly for fourteen years. Once a year I take a trip without Rob or my family. We participate in parental support groups at CFRI. We take weekend trips without the children at least two or three times per year. We talk to our children's therapists whenever necessary. We pour energy into CFRI where we help not only our son, but also many other children and adults who have cystic fibrosis. We feel that by helping others, we also help ourselves.

Raising a child who has CF has required patience and effort. We have tried to help Carl become a normal, happy person because we want him to be responsible, to have relationships with others and to be a contributing member of our society. We've encouraged him to have a sense of meaning and purpose which is vital to his health. We have avoided making him feel special because if he felt too special, he might expect others to care for him rather than taking pride in caring for himself. We have raised Carl to know that he, like his sister, has a future and that he's in charge of making it happen.

Editor's note: For the past three years Ann Robinson has been the Executive Director of Cystic Fibrosis Research, Inc. (CFRI). She lives in Palo Alto with her husband, Rob, and two children, Clare, who is a junior at Smith College in Northampton, Massachusetts and Carl, who is a sophomore at Gunn High School in Palo Alto.

Note: This article is excerpted from Boundless Horizons, Lucile Packard Children's Hospital at Stanford's CF Newsletter.

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