By Judy Weintraub, MSW

The 2:50 p.m. bell rang at the Bronx High School of Science signaling the end of another school day. Outside, my mother waited at the wheel of her brown Dodge Dart. Earlier that year, during my sophomore year of high school, my kidneys had finally reached the point where dialysis treatments were necessary. My mother watched as hundreds of boisterous, laughing teenagers spilled out of the front doors. In their midst she saw me emerge, struggling with an overly stuffed backpack and a severely deficient blood count. “I felt so much anger,” she recalls, “I couldn’t believe how unfair life was.”

While she struggled with these feelings, she was determined to be strong for my sake. I remember laughing with her in the car on the way to the dialysis unit. I was too weak in those early months to participate in peer activities outside of school, so instead we planned activities we would do together. On days when I was too weak to go out, we planned special lunches to prepare before dialysis treatments when I could ease up a little on the protein, sodium and potassium-restricted diet. Looking back, I marvel that I made it through those early trying years filled with hospitalizations and unexpected complications. Through it all, my mother demonstrated strength, will and perseverance. When I was a young child, she perceived doctors as authority figures who were beyond questioning. She was filled with fear that my childhood kidney disease would worsen and sought to protect me in a way she could from further harm. Doctors often dismissed her fears, thinking I would outgrow my condition. But they were wrong and over the years, it became only too clear that the doctors did not have all the answers. When I was hospitalized for a month at 15 for my first transplant, my parents made whatever adjustments were necessary so that my mother could be at my side day and night. It was an extremely traumatic period with many close calls and my mother was the rock I held onto. I’m forever grateful for her phenomenal strength. She was always there with a comforting hand and a smile on her face and I felt protected.

Meanwhile, she grappled with feelings of anger, fear and helplessness. The one place my mother recalls drawing strength from was the waiting room outside the pediatric dialysis unit. It was there that she found an informal peer support group of mothers whose children were on dialysis. It was in this setting that she regained her hope as she encouraged other mothers and was in turn encouraged by them. Over time, she even learned to go a little after she watched me pull through those early difficult years and saw my health stabilize.

Support and education are the two indispensable tools in dealing with chronic illness. When a family is faced with the diagnosis of their child’s kidney failure, they often are in a state of shock. Doctors and other healthcare team members must be sensitive to the significant life adjustments that will be made. Parents must act quickly but need time to absorb the sometimes overwhelming amount of information necessary to manage their child’s illness. Quite often, the nurses are the ones who take the time to explain all the medical information. Dietitians and social workers also provide information to demystify the process. Sometimes additional group classes may be offered to review the information in a different setting. When parents are grieving over their child’s diagnosis, they need to hear the same information presented in different ways in order to integrate it. It is also essential that parents have an opportunity to meet with other parents. By meeting regularly, they can share experiences and begin to develop coping strategies that work for them.

Chronic kidney disease impacts all members of the child’s family and therefore, all members of the family need to be educated about the disease. Siblings in particular are impacted. They need to be involved and allowed to express their feelings. They need to become aware that feelings of jealousy and resentment over the attention given the child with the illness are normal. Siblings who help out should understand that they don’t always have to be in the role of caretaker. They need time away to have fun and develop their own interests.

Children with kidney disease not only face many adaptations in their lives but also face the physical realities of their condition. They may fatigue easily, require frequent rest breaks and may be dealing with a variety of physical complications of their illness. They may have many concerns they cannot readily articulate. These concerns may manifest themselves in a wide range of behaviors such as low motivation, extreme risk-taking. It is important to accept that depression is a normal response to the diagnosis of a chronic illness and that children as well as adults must be allowed the dignity to process this change in their lives. Children must be given the opportunity to express their feelings and discuss their concerns. It is very common for children to be highly uncertain about their future and reluctant to create their own dreams. Allowing children to connect and interact with well-adjusted young adults whose kidneys failed during childhood is a powerful way to help children gain the confidence they need to allow themselves to dream again.

Once the child’s health stabilizes, he should be encouraged to participate in school and outside activities. Children and teenagers need to be involved in activities which promote feelings of accomplishment and will develop their imagination. This is the key to developing their self-esteem. During hemodialysis treatments, reading, listening to books on tape, and working on art projects are some positive ways to spend the time. Spending time with a mentor or buddy while on dialysis is another possibility.

Children with chronic illness often have a lot of down time and passive activities such as TV and Nintendo should be kept to a minimum. It is essential for these children to be exposed to experiences in which they can be active participants, thus broadening the possibilities for themselves in their minds.

Children can be taught to participate and take responsibility for their own care appropriate to their ages. It is important for school-age children to know the names of their medications and be familiar with their routine. During the teen years, adolescents should be encouraged to share in the responsibility for making appointments and spending time alone with the doctor and other members of the healthcare team. Sometimes it’s difficult to assess a situation to know when the child is feeling fatigued or it it’s an indicator that something else is happening. At first, it’s a daily balancing act and it helps for the child to gradually learn to identify his own bodily symptoms and communicate them. Then, at one point, when the doctor questions the mother, the child will be ready to intervene and speak for himself directly. This helps the child become in tune with his disease and eventually take ownership of it.

An independent young adult acts and thinks for himself and is self-directed. A critical step towards independence is the ability to talk about one’s disease. This is especially challenging in the case of kidney failure. Because many times, this is an “invisible” health condition, children will often struggle over what and how much to explain to teachers, coaches, counselors and friends. It helps if parents are given the tools to discuss these issues with their children beforehand. Children can then learn it is possible to be independent yet need help in some areas. That independence is reflected in the ability to identify one’s limitations and know how to ask for assistance.

It is so important that we treat children as children first and not create a whole different set of expectations for them. But life is not so clear-cut. The reality is that a diagnosis of chronic renal failure is not an ordinary event in a child’s life. It is not ordinary to have to endure large needle sticks three times a week, to be on a special diet, to tire easily, to have a catheter or to take medications with an array of side effects. Sometimes the usual standards need to be suspended for a while during a particularly trying period. The challenge for families is to know at what point to resume expectations when the child’s condition stabilizes. Communication lines must remain open so that all family members, including siblings, are aware of the current stat of events. Children are remarkably resilient and have proven themselves adaptable in so many challenging circumstances.

Families who are offered hope, guidance and encouragement may have the hightes potential for raising children with the emotional strength necessary to face the up and down periods of life with a chronic illness.

This article originally appeared in the Fall 1997 issue of aakpRENALIFE, Vol. 13, No. 3.

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