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Coping
Sue was quite sick during her seventh grade volleyball season with another abscess. I don’t think she took more than three or four days off; she would go to practice even though I know she was uncomfortable. She was on the varsity volleyball team as a freshman. She was not going to let this stop her from doing what she wanted to do. I think there was a period where she sort of said, "This has ruined my life. I can’t do anything I want.” But we talked a lot about choices and how you can let it ruin your life or you can keep doing what you want to do. And she kept doing what she wanted to do. I can’t think of anything she hasn’t really been able to do. She’s done very well.
My husband and I really wanted Tim to see a psychiatrist, because in the early stages he would hit himself a lot and try to strangle himself, just out of rage. So we knew that we couldn’t cope with the psychological part of it. But he wouldn’t see a psychiatrist himself. We went twice and we got a lot of help out of it- a lot of support for how to deal with a kid with a chronic disease. But mostly Tim’s been amazing. I mean, he has an incredible relationship with his doctor; he just adores him. It’s a very, very special relationship.
When Tim was getting tested and having different procedures it was mixed: on the one hand the doctors and nurses were fabulous, but on the other hand it was horrible for us at home. Tim is the kind of kid that behaves beautifully under pressure with doctors and nurses, but he needed an outlet to yell and there was no one but us to get it. So it was hard— the frustration, the fear, all of that stuff is quite real and very difficult. He managed to be faced with the recognition that you have something that’s not going away. Someone just can’t say, “Well, do this; he’ll be fine tomorrow.” That is of course incredibly horrifying for a parent, because you want to make it better; you want to trade. I’d rather have it; give it to me! I’d prefer to have it.
It was really hard on her older brother to see his sister so sick before the diagnosis. And then it was really hard on him when she was diagnosed, to know that there was something wrong with her and not be able to do anything to make it better. He felt terribly guilty that there was nothing wrong with him; that it was her instead of him. It was very sweet; he’s wonderful. But I think that was hard because he couldn’t make it better and he likes to be able to make it better. But also there was a period where he felt very guilty because he’s had very good health and done very well. So he felt lucky and couldn’t understand why she was the one who got it and he didn’t.
There is stress when living with a chronic disease as a family because I’ve sort of been able to see that, in many ways, his pain runs the household. So on a bad day, it’s a bad day for five people, not just one person. That’s sort of misplaced but it’s pretty hard to avoid. I see it coming. I think I’ve found better ways to deal with it so that I can deal with his siblings in positive ways and not let them feel too worried or upset.
One thing that has been so positive for us is that our son has really not skipped a beat. He is a very fine athlete: he plays tons of tennis, tons of basketball, and really pushes himself very hard. This has not really interfered with it- that has been a positive thing. I think that if he didn’t have his sports, this would have been really devastating, or if this had caused him to stop his sports, it would have been devastating.
I don’t know that my learning curve was ever fast enough to really put my head around all that was happening. I just kept thinking, “Just move ahead- just jump ahead without understanding parts of her condition,” even though I had no idea what was going on. Now, I’ve been reconciled with that, and I see things a little more clearly. I think I both wanted and didn’t want to know about what was going on. Hearing people talk about the same conditions we were struggling with, hearing personal narratives of people who’d gotten through the experience and talking with them, everything sounded so familiar. I realized that I didn’t feel alone. I felt like, “Oh my gosh, there are all these people going through the same thing.” That was really, hugely helpful.
I found that I was constantly asking questions, and that the answer that I wanted just wasn’t available. Why is this happening? What is this going to do? How is this combination of medicines going to work? There are so many questions when you’re in the middle of it, and you just have to just wait and see. My daughter was so brave. Believing that things were going to get better helped. Laura was such an inspiration because she was so strong, and I guess it was her hope and faith that made me believe that she would get better. Someone would say something like, “Have patience” or, “Look to your past,” and it’s amazing how someone saying something like at the right time pulls you through to the next place.
Talking face to face with people who have been through it really helps. Another thing that really helped was hearing somebody say, “Oh, so-and-so’s daughter, or sister, has that.” I kept a journal of other people’s different experiences that I heard about. It helped just to hear that somebody else had gone through it. One of the things I’ve ended up doing has been to make myself available for people who are going through this. There is a real need for that. Each kid with IBD has such a different story that it is hard to match your story. You want a clear solution, but it’s a major condition that doesn’t have an easy answer.
Therapy is great, but Laura doesn’t want to talk about it with a psychiatrist. She’s more conversational; she needed more of a friend. But go ahead and accept whatever support you can find. I would highly recommend that you get someone from whatever kind of coping clinic the hospital has. Even though it’s awkward, it’s important to bring this stuff up, and to leave it behind, not store it somewhere in your body. Laughter and humor are really important. Laura has a spectacular sense of humor. She laughs at the bodily sounds. She had a name for her pouch— Gerdy. She laughs and jokes about it. You can’t be modest when you’re in this situation. People are constantly probing you and looking, so I was always so grateful that she found it in her to have a sense of humor about it. I think kids in this situation long for humor because the experience is so intense. It’s all of the most embarrassing things that you wouldn’t want to have happen.
Asking for help from friends makes a big difference. Those people, when they hear you kid is in the hospital, are very happy to drive your kids or take them home with them and feed them dinner. I think that’s just human nature: people want to help when they can. Actually, the first time Paul got sick and was in and out of the hospital for four months, one of my close friends said there were people calling her saying, “How are things going?” rather than calling us, because they didn’t want to bother us. They also asked, “Is there anything we can do?” She finally called me and said, “You know, a lot of people wanted to help. What do you think of us cooking for your family?” She said they could do it every night if we wanted. I said, “I don’t think we need it every night.” But there were two nights a week where it was impossible for me to cook, even if Paul was home. For five or six months, she organized people twice a week to deliver meals to our house. And that made such a difference, just making sure that everyone had a good meal twice a week. Not eggs or peanut butter and jelly sandwich, which is what often happened when we were in that kind of state. So being part of a community that wants to help really makes a difference.
My friend Erin has Crohn’s disease. I hate Crohn’s disease, as a friend and as a person who gets to see it firsthand in my job as a nurse. Crohn’s can be so debilitating in some people and it makes kids so sickly. It’s an unforgiving disease. If you see someone with another kind of IBD, it’s a problem, but at least you can deal with it and there are things you can do about it. But it’s particularly frustrating as a nurse and as a friend to see Crohn’s disease happening to people, because you feel like you just can’t do anything. You feel like you’re up against a wall and there’s not a lot you can do for these patients except treat their symptoms and take care of their exacerbations. I’m always trying to cheer the kids up, but it’s very frustrating not being able to provide the answers to patients and give them better treatment. |
Varsity Volleyball Team
Talking to Other Families
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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. Updated November 12, 2004 |
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