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Words of Wisdom
Read as much as you can about your child’s condition, but don’t let it scare you; don’t focus on the worst-case scenario. Have a positive attitude, and teach your child to have the attitude that this can be controlled and it won’t stop him from having a normal everyday life. If my kid right now didn’t have his problems with tension headaches and migraines he would have a very active life right now, despite his stomach problems. And don’t feed into it; feeding into anything, especially involving the stomach, just makes things worse, and I know this from my own experience. As a child growing up I had pains in my stomach and I would have little IBS attacks where I had cramping and I needed to go to the bathroom. And I would say, “Okay, we have to make a pit stop—- find me a ladies’ room.” And then my friends would say, “Do you want to go home?” because obviously I was a little drained. But I would say, “No, let’s go have fun; the pain is over with,” even if I wasn’t feeling a hundred percent. Because I knew that if I said, “Yeah, take me home,” that I wouldn’t have a life and I wouldn’t have enjoyed anything. That’s what you need to teach your child, that they can deal with this. When it’s bad it can be really bad, and you just hope that things are going to be right, but when it’s starting to ease up, you should show them the positive side of everything.
It’s really tough for parents in the beginning; you don’t know what to expect. But just keep positive— try to be positive. And keep going— try new medications; if the first one doesn’t work, try another one, because there are so many out there. You have to know your own child and what they’re capable of doing.
Before my son was diagnosed, I knew nothing— I had never even heard of Crohn’s disease. I had no clue whatsoever what this was. And since then I’ve found out that people I’ve known for years have IBD, but I just never knew. Actually, somebody I work with has very serious colitis. I just think that people, if something’s not affecting them personally, just go through life oblivious. They don’t realize all of these different things that are going on around them and affecting so many people. It was only when he was diagnosed that I found out how many different people I know are affected by either Crohn’s or colitis or some other kind of IBD.
For me as a mother, there was a lot of guilt. I thought, “Okay, what am I doing wrong as a mother— why is my child so sick?” It was a relief to realize that it wasn’t me; it’s just the way his body is. And I learned how to cope with it; it helped my husband and me understand ways to do what we needed to do without having that guilt. So we knew when we could tell him he should brush something off without feeling guilty because he’s ill and we’re telling him to brush something off. So it has helped seeing counseling through all this and getting, at a transition, the sense that this is something we can deal with; this is something that is treatable. Yes, he does have it for life, but it could be the case that he never has another attack again. On the other hand, he could have an attack a month from now, but if he does we will know how to handle it. So it is good to have some outside help, and don’t be afraid to ask for it.
The one thing that happened to me was that I began to do research about the disease— I read all these websites and I read all these chat-rooms— and what was hard for me was to realize that there are a lot of different gradations of the disease. Because what you see in the chat-rooms and you see online are sort of the worst-case scenarios of really, really, really sick kids who are chronically hospitalized and have all sorts of surgeries. My daughter has had some surgery but not major surgery. We know now that there is hope and know that it can be managed and know that you can actually lead a normal life. I never picked up any of that information when I was trying to sort things out at the beginning; it was all about, “Here’s how you get help when the schools are being difficult” and “Here’s how you manage a kid who stays home all the time.” Nothing about the kind of kid who can carry on and play sports and do all of that stuff even while she’s coping with it. I wish I had seen more cases of kids who have a less devastating experience with it.
The doctors are busy, yet you can’t feel that you don’t have time to ask them your questions. We go in on clinic day and there are tons of kids and it’s really busy. It always takes three hours. I have learned that if I really want the time to talk to the doctor, that I need to feel that I can; (a) make an appointment to go in at another time, (b) make a phone appointment, or (c) email. It took me a couple years to figure that out- that I had a right to demand time and that I didn’t have to assume I would get it at the appointment, unless I said ahead of time that I was going to need more than the regular time. I think there have been a couple times when we’ve had miscommunications with the doctor, and when I think about it I could have said, “Wait a minute— I want to talk with you about this stuff.”
It completely changed my life. I think this experience has been one of the most powerful of my life. For example, I’m a teacher and it changes the way I look at giving extensions. I’ll give an extension for anything now; I don’t care. Maybe I bend too far the other way, but my perspective on the world is so much broader. You know, that’s probably a good thing that’s come out of it. I think I’m much less judgmental about a lot of things because I recognize that you don’t always know what’s going on. So I did find it life-altering.
I think that ritual is good, and we have rituals about our hospital visits. Because we know that we’re here every eight weeks, one thing that we’re very careful about is to schedule any related appointments for the same period of time. I’ve been very demanding in that sense; if there is a study that we’re involved in, I’ve made it clear that we’ll make ourselves available only at the time when we’re here so that we don’t have to be here for more than that one five-hour period every eight weeks. The ritual for us always involves being here early, going down to the cafeteria, and filling up a tray with as much food as possible. I also bring a bag of videos, snacks, junk food and soda, because it’s a long period of time. I’ve learned that there is nothing worse than asking a child to do homework or read during an infusion, but TV is great. Our ritual is usually to get take-out Chinese food afterwards; our child is usually very tired afterwards. It’s important to dress comfortably and to make sure a child has clothing in case it becomes too cold in the hospital. We approach everything here with a sense of humor, and I think that makes it work out very easily. We’re just hopeful that our child continues to enjoy good health and that he’s in a very long-term remission.
You learn a lot from this experience to value good health, and to realize how lucky you are by comparison. When you’re in the hospital, you see a lot, and I think that you just learn to be appreciative of what kind of medical care you’re getting, to be appreciative of when you feel well, and just to be more sympathetic to other people’s situations. This for us is sort of a secret and private matter, and I think that what you should remember is that generally every family has something. You may not know what it is, but most of us live with something that we’re trying to deal with. We don’t always disclose it.
Laura was so incredibly strong during the whole thing. I don’t know if it’s harder for a mother to watch her kid go through it, but I saw so much that I had to remind myself that it wasn’t me that was going through this— it was her. Kids are incredible; they are much more resilient. Just because of their age, they are always hopeful. Her condition would swing around and I would honestly get shell-shocked. She’s run into bumps along the way even after the big solution— the operation. She’s been through so much— it’s unbelievable. Maybe because I’m older and able to express it more, I see what she has been through. She has doing amazingly well. My heart goes out just because I know how difficult it can be. It’s a hard thing, when you just want your child to get better, to see them suffer.
There is something to be said for not dwelling on things. Laura is able to deal with all of this because she can leave it behind sometimes. It doesn’t help to dwell; it is so much healthier to move forward.
Keep the faith. It is a long, hard journey, but things do get better. I knew that I had to deal with my approach to coping, which was to gather information. There was no amount of information that would really answer our questions or clarify for us what the problem was; it was just more information. Gathering information doesn’t always give you the answer, but it gives you something to do while you’re waiting for your child to get better, and knowledge is really helpful. It enables you to trouble shoot, or at least anticipate choices that you might come across along the way, and prepares you to deal with them. It’s not easy, but there are wonderful doctors, nurses and scientists working hard to solve these problems. Educate yourself. Keep the faith. Get your own support someplace too. Take care of yourself, exercise, or get a massage so that you are better able to be a good support and maintain a good frame of mind. There are a lot of people out there going through this, myself included, who want to reach out and help others. You don’t have to feel so alone.
Before my daughter was born, my world was based on assumptions. I assumed that since we were good people, only good things would happen to us. I assumed that nothing bad could ever happen to my baby. I assumed that with hard work and patience, all our family’s dreams for the future would come true. I assumed that my only child would grow up happy and healthy, graduate from an Ivy League college and make me a proud grandmother someday. All these assumptions were shattered in a 20-minute doctor’s appointment when To professionals who are working on their contribution to building a trusting relationship with a family, I would suggest that they let their humanity show; parents value not only their medical expertise but also their compassion. You don’t have to be a perfect doctor or nurse if you show me who you are as a person, if you demonstrate you understand we’re in this together. That’s what will get the team (parents and professionals) through the tough places. |
Positive Attitude
Resilience
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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. Updated November 12, 2004 |
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