Parenting in the hospital

My daughter Nikki was diagnosed with acute leukemia when she was six-years-old. Hospitalization was difficult, of course, though during its course I learned much about what worked and what didn't to help us both. I hope that our struggles and successes will help you if you find yourself in a similar situation. 

I told her right up front that I would never lie to her or keep things from her, and I stuck to it. Then I'd make explanations as simple as possible.  I told everyone working with her that I expected that there would be no surprises -- that they needed to let her know in advance what to expect.  I'd do that too, giving her such explanations as, "today you will have to get two shots -- one in your leg and one in your arm. The one in your arm will probably hurt a lot, but it won't take long and I will be right here to help you." and "we will have to go to another room for a test called an MRI. This is what it will be like...." Honesty helped her enormously.

I found that it also helped her to have a sense of what was going on.  And to have as much control as was possible, even with seemingly ridiculous things. When she wanted to wear a tutu to radiology, I let her. When the nurse would come in for a shot or procedure and she was balky or scared, I'd tell her that she could decide when it happened, though to control how long that went on, I'd set an alarm, tell her how much time there would be, and tell her that she could pick when to start, but if she didn't pick by the time the alarm went off, it would have to happen then. 

I learned that I had to practice being totally matter-of-fact about whatever awful thing was being inflicted on her, no matter how she felt, or how we felt. When we disagreed with the treatment, we were careful not to discuss it in front of her. 

I found it VERY helpful to make sure that I maintained eye contact with her, for her and for me. When she was very frightened or unsure or when something awful was happening, I would put my face right in front of her and say in a loving but directive tone, "look into my eyes. " Then I'd tell her the important things about that event, like "I will NOT lie to you. This will hurt, but only for a moment, and then it will be over and everyone will go away and let us rest. You need to stay very still. You have to do what I say so that it doesn't hurt more." 

Strangers and friends showered Nikki with gifts and indulged her, so it was important that we not change our approach to discipline. We figured that changing how we were as parents would actually scare her a bit because she would know that special and unusual behavior can't be good. Whatever behavior elicited a "no" before got one now, even when we'd REALLY like to indulge her. It helped her learn self-control, which she needed, but it also reassured her that the fundamentals of her world would remain the same; that mommy and daddy still love her and still expect the same behavior from her. 

Like most children her age in similar situations, she regressed, some of the behavior okay and probably necessary. When she was acting like a baby and it didn't matter, I would acknowledge it and make light of it. When she wanted to drink from a bottle, who cared. When she lost  potty training skills, big deal. When she wanted to talk like a baby, groovy, but we expected her to act her age when we said so, like when she needed to go to radiology, for instance. 

Nikki wanted me to carry her everywhere...mostly fine. However, her lungs began to collapse and she needed physical exercise to reinflate them. She would NOT walk. So, in a fit of epic proportions, she sat in the middle of the hallway demanding that I carry her to her room. I
would not. She screamed, wailed, yelled, threw things, threatened, etc. for almost two hours. Eventually, she had to go to the bathroom and I told her she could pee on the floor or walk to her room, but I wasn't carrying her. It was something to see and it was very hard to stand
dispassionately and repeat that she HAD to walk. Finally, she gave in and walked to the bathroom. We tried our best not to cave in to these demands for control when control was not in her interest, though of course it was very hard to resist. (P.S. The two hours of sobbing and yelling puffed up those lungs quite nicely!) 

For what it's worth, we came out of the first few horrible months much closer than I ever dreamed possible and Nikki gained considerable self-confidence through the process. But what a way to get it........

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Created: November 14, 2004