 |
    |
How Kids Cope
This is the bottom line: unfortunately, other kids your child’s age don’t normally have to deal with this kind of thing. God— if I could take it away, I would. You can cry about it, scream about it, and have fit about it, but don’t waste more than a day on it because it isn’t changing anything. Get past it.
Seeing her positive makes us positive. And that’s just it; she has this kidney disease, so we just go on and go forth. She’s my hero— she’s my heroine, because she’s got such a dynamic outlook on life. If one of the family members had to have a kidney disease, she’s happy it’s her because she knows her other sisters couldn’t take it. But her outlook is just positive, positive, positive. She’s smiling all the time, and I think that’s a big thing. But family support is great too; we’re right beside her all the way.
The first time that I walked in to the lung transplant group meeting, I saw at least ten or twelve people sitting around a table and they were all transplant survivors. It was just wonderful to know that these people had all been through it and had survived. I actually ran out and called my daughter. She was very excited but also got very detailed, asking things like, “Well, how many of them have cystic fibrosis?” But she eventually started coming to the meetings and that provided a lot of support for her. She was the youngest member there and not all of them had cystic fibrosis; there were various reasons they were having lung transplants or had had them. As they introduced themselves, we found out that some of them were post-transplant and some of them pre-transplant. I know once Beth had the transplant she said, “I can’t wait to go to the meetings and say I am post-transplant.” So I would say that meeting was probably the thing that turned the tide and helped us the most.
Of course, because they’re just normal children, they make mistakes sometimes and have to be punished. But one thing that I found really interesting was the resignation. I think because these kids are so used to missing out, being disappointed, and not having things that they want or that they’re used to having, they become very resigned to the punishment. And as a result, it’s very difficult to think of a punishment that is really a punishment. An example for Riley is that she loves to go to the mall. So she did something and her punishment was, you know, you aren’t going to go shopping for a month. But it just became a non-punishment; she just resigned herself to the fact that this is just one more thing that I miss. She didn’t say it that way, and of course it was initially really awful and all of that, but I’m telling you that within days it was as if it didn’t matter. And I’m sure it did, but it’s not the same as with my other children. It doesn’t have the same impact, and so you find yourself navigating truly unchartered waters trying raise a kid, provide them with boundaries and do all of the things that you’re supposed to do, including rewarding and punishing them. In a family with a teenager, you really have to set the boundaries and have some repercussions for their behavior. And it becomes very difficult— a very fine line— because she does miss so much, we are sympathetic, and we understand why this behavior is happening. But at the same time we cannot condone it, and there has to be some sort of resolution to it— some sort of punishment for the action so that the action is controlled.
Waiting for the second transplant has been tougher, because Lisa is more aware of how it has affected her life than before. There is no doubt that she has been essentially left out of the teenage years. It’s been difficult to watch her younger sibling start high school this year, and to watch her younger sibling do things Lisa probably wishes that she could have done. Part of it is just as simple as not being able to participate in a full class load; Lisa only goes to school half time because she physically can’t do a full load. She can’t take all of the extra-curricular subjects that she would have loved to have taken, like cooking or art class. She had to concentrate on doing just her core subjects: math, English, social studies and science.
I was a bit worried, though. This wasn’t his first surgery so I knew basically how things worked and how they went about it— it wasn’t exactly new to me. But it was still a new operation, so I was worried about that. But this was a long thing so you could prepare for it, and sort of knew how it was going to work. A Sibling
It was sort of hard too, because we only had one parent. It’s hard to have two people in your family recovering; it’s a lot for most people to have just one person in the hospital. So you have to do quite a bit of extra work. It was sort of busy because my mom had to look after my brother and I had to look after all of his animals— he actually raises chickens. [EJ note: Here a younger sibling is talking about what it was like having his mother donate a kidney to his brother.]
It’s a lot easier for my brother now; he’s a lot less conspicuous because he doesn’t have to go back home to his machine. It’s a lot less hectic, because when he used to be on dialysis and we couldn’t just go away every weekend without him hooking up to a huge machine. We definitely went to less places. You have to really worry about being back on time. A Sibling
I really understood what was going on, and that was good. People explained it to me. That was very useful because it wasn’t just one surprise after another— I knew when things were going to happen. A Sibling
Part of what I said to Melissa and am still saying to her now is that a lot of times we have to take things one step at a time. Instead of thinking, "What if.? What if.?" this is where we are, and this is what we have to think about. We can't worry about "What if?" Melissa has certainly learned a lot of that, I think. The kids all had their favorite quotes in the eighth grade yearbook, and Melissa went through I can't tell you how many things and ultimately settled on a quote from the movie "Finding Nemo," which was, "Just keep swimming." I think that sums up all of the things we've been trying to say for so long about coping— that you just have to keep going and you get to the next step. And then sometimes you can look back and think, "I didn't think I was going to make it this far, but look where we are!" |
Bottom Line
Group
Just Keep Swimming
liver 
 |
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 |
 |