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Telling Friends
I think it’s hard for kids, especially when they’re younger, because they’re afraid of some kind of stigma being attached to their being sick— of their friends thinking, “Oh, look at her, she’s sick.” And so they don’t want to say anything. But I think that a lot of times their friends are worried and don’t know what to think, and they like to hear from the kids and to know that they’re okay. They would prefer to see them and to be able to keep in touch with them, the same as everybody else does, because it’s reassuring— they know you’re okay, you know they’re okay. So it’s a good idea to keep in touch with kids and help them or encourage them to stay in touch with their friends.
I let people know that my son might not be able to talk or might not want to talk while he was in the hospital, but that he enjoyed just having people be there with him for a little while, because he felt very cut off from the world. I remember one time a little boy from the kids’ baseball team that my husband coaches came to visit him in the hospital. Steven loves baseball— it’s his passion. When he was well, Steven went to watch all of their practices and all of their games. One of the boys came in to visit Steven while he was in ICU and at that point he was not talking to anyone. He was also hardly able to move— he couldn’t lift his hands— and he was in really bad shape. I could tell that the boy who was visiting felt very uncomfortable because he was trying to have a normal conversation with Steven like he remembered being able to do, and it wasn’t happening. I wasn’t sure exactly how Steven felt about the situation either, actually. Eventually Steven needed to go to the bathroom— he needed the bedpan, so I had the boy go out while I helped Steven with the bedpan. Then somebody told us the boy was getting ready to go, and wanted to say goodbye. And Steven looked up and said, “Oh, Chris’s leaving? Can’t he stay for just a little while longer?” So I went back out and I said, “Do you know what, Chris? He can’t talk to you and he’s not going to answer your questions. But you’re really making him feel better just being there. Do you think that maybe you could go in and just for half an hour or so, tell him about things that you’re doing? Tell him about your current team and all of that, and don’t really expect him to respond, just talk to him.” And he did. Sometimes people don’t understand what it’s like to be in the hospital— they don’t understand how it affects the patient, and they don’t know what to do. So they need really clear instructions on what’s okay and what’s not okay, on what to expect and how they can be helpful. I’ve always just tried to communicate very clearly with people and to evaluate each situation.
I have really been giving details about what has been going on, trying to explain it as best as I can. I’ve tried to be creative, that sort of thing. It has helped out.
The only thing I mention to people about my son’s transplant is that he is immunosuppressed. I tell them that because of this, if they know of someone who he’s going to be with who has the flu or something they should just let me know. It doesn’t mean that the child has to not show up to the place where my son might be, and it doesn’t mean that my son can’t show up. What I did was that I asked friends and family and other people he comes in contact with, “If you know of some illness going around, just let me know.” And people do— someone called and let me know that there was measles going around and people have called about some other things. Then, on a case-by-case basis, I make a decision. I think for the most part my son knows how to deal with this himself, now that he’s older. He knows that if someone is sneezing or something that he should sort of remove himself, and he cleans his hands a lot. I don’t feel an overwhelming need to tell people very much.
You have to make sure that you have somebody else to talk to about your fears. It could be a therapist, your best friend, your mother, your father, your priest— whoever, but make sure you have somebody who is there for you to bounce all your fears off of, so that you can appear calm, cool, and collected. I’m not saying walk around like the tough soldier, because if you need to cry about something, you need to cry about something. But you want to make sure you don’t make your children incredibly fearful. If you’re sad you need to cry, cry, and then get up and go on and do what you need to do. You need to have a lot of control; you need to be able to stay focused on raising a child that’s going to grow up. So don’t them get away with hell because they’re sick, and don’t let them get away with being rude because they don’t feel good, because you’re still raising a child.
It’s so helpful to write and make calls, and tell people how you’re doing and what is going on. People feel left out and want to keep in touch with what is going on.
I find that most adults just try to overlook it. Kids, on the other hand, are great to educate. Young children are honest and open, and they’re not overly careful about what they say or do, which provides good opportunities to educate them. You can put a positive spin on the illness, and use it to educate. My husband and I weren’t organ donors before Lisa got sick. We’ve had organ donor booths at town fairs or community things like that. We’ve done interviews with the local TV stations, both for fund raising, and also to make the public aware about the need for organ donation.
I think that a lot of my daughter’s friendships are stronger because of the transplant experience. Some people who before were acquaintances are now friends; the relationships have been strengthened. At first, Melissa wasn’t sure if she wanted to say anything to anybody, and I wasn’t sure if I wanted to say anything either. But you can’t just disappear; you’ve got to stay in touch with people. We put up our own website [through the hospital] and the teachers at Melissa’s school had it posted and would check it, and other parents would check it too. I think it provided continuity and a way to keep everybody clear. It’s hard because transplant is a really difficult thing to go through on your own, but it’s also sometimes a really difficult thing to go through with other people, because it’s so intense.
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Telling Friends about Hospital Stays
Telling Other Children about a Sick Child
Advice about Immunosuppression
Educating People
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Copyright © 2005, Children's
Hospital Boston Department of Psychiatry. All Rights Reserved. The information on this website should not be taken as medical advice, which can only be given to you by your personal health care professional. July 26, 2005 |
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