Emily, 16, always seemed to have a smile on her face, but something in her demeanor told me there were other feelings below the surface. She was describing her family at one of our retreats, and as she began to talk about her brother Jimmy, her body language changed.
Jimmy has Down syndrome, and he has had a challenging first six years of life. Emily has become extremely attached to him and is an integral part of his daily care. Her voice quivered and she began to cry as she described how scared she had been when she’d thought Jimmy might die during a health episode. She got mad at herself in that moment, saying, “I don’t know why I’m crying, there’s nothing to cry about, he’s fine now.” But the tears refused to quit.
Every child who has a sibling or parent with a disability or chronic illness is affected deeply. Many take on the role of surrogate parent, and they feel valuable because of this. These siblings learn to get out of themselves and become of service to others, and this can cause them to be more mature for their age.
But there also can be negative costs to having a brother like Jimmy. Emily had decided inwardly years ago that her brother’s needs were more important than hers, and that she shouldn’t have needs. It was really hard for her to ask for help or to allow others to be there for her. Emily and others in her shoes often don’t feel safe to express all their emotions about their lot in life. They sense that their parents often are on edge, and they don’t want to add any stressors to their parents’ load. So they repress anger, fear, disappointment, sadness, resentment and hurt and put on a perpetual happy face.
Being honest with us about her feelings and expressing all of them was cathartic for Emily. She learned that any emotion she has about Jimmy and her family is OK, and that her parents will be able to handle her feelings. She’s aware now that it’s acceptable to have needs, and that her desires are important, too. Finally, Emily gave herself permission to be a kid, and not to carry the burden and responsibility of her brother’s care with her 24/7.
It is critical for parents to ascertain what siblings of sick children are making of their experience, and to help them reframe any negative or false beliefs. Emily can continue to be helpful with Jimmy, but she’s doing it now as a big sister, not as the party responsible for him. And she is doing a much better job of taking care of her feelings and needs. Kids who have a sibling with a chronic illness need help in gaining perspective. That way they can be and act like the kids that they are—and their experience can strengthen them, not consume them.
[Tim Jordan, M.D., is a Behavioral Pediatrician who specializes in counseling girls ages 6 through college. For more information, visit drtimjordan.com.]