Take it step by step
She does not understand a thing at this point. She just turned four. She’s starting to remember that she spent time in a hospital “when she was a little baby,” as she describes it. Today as we were walking in, for example, she said, “Mommy, I came here when I was a baby!” And she remembered the playroom and she remembered the gift shop, so she’s starting to talk about things like that. She has a huge scar on her belly; to this day she has not mentioned it to me, I think she just thinks that every kid has a scar. So at this point I don’t think she knows a lot, and I’m going to go with what people have told me: as she starts to ask and talk about it, I’m going to kind of take it step by step…I’m really hoping that the social worker here will help us with that! I mean, I know she will, she told us she will. And she told us it’s usually age six to eight that they really start to pick up on things, so I’m going to take her lead on that.
Mother of Hannah, 4
Very open with him
We made the decisions, but then we talked with him about what that meant, and were very open with him about where the lungs were going to come from, and what the surgery would be like. So we were very open with him about the whole process, but the decision was ours to make…he didn’t really react, in the sense that I think he was too young to really kind of understand it all.
Mother of RJ, 12
It’s not his fault
He’s always been a very caring child, but certainly I think he’s just more aware of sick people and what can happen if you’re very sick. And he’s often talked about how he would think about the other child that died, and he had a hard time shortly after the transplant happened.
We did a lot of talking and supporting him…just tried to help him understand that it’s not his fault that the [donor] child died, that that was going to happen anyway…getting him to understand that it’s a gift that a family chooses to give, and that we were just lucky to receive it. And I think the more I told him that, and the more he continued to get better and feel stronger and be able to do things.
Mother of RJ, 12
She went to counseling for two years with somebody. They made scrapbooks on feelings, and they played games in there, but while they were doing it they would just talk about how life’s not fair. Because it isn’t! There are no promises, there are no guarantees.
Mother of Eva, 13
That’s all we can do
I would just tell her to pray all the time. She’d say to me, “I am, I did, I am!” I would just be like, “That’s all we can do.” So faith definitely plays a big part.
Mother of Alanna, 15
I used to try to get Isaiah to go talk to a psychologist but that’s another story in itself, because Isaiah, he’s not talkative. Well, he’s talkative, but it’s with people he feels comfortable with. I used to always say, “You need to have another outlet. You need to be able to talk to somebody,” and he’d say, “Well, I talk to you!” And I was like, no, because now as he gets older, I’m seeing that as a boy, there’s some things you’re not going to want to tell your mom! And catheterizing, you know, as you’re a teenager, that must bring a whole lot of other issues!
So I know there’s things he probably wants to talk about, but I could not get him to. He saw a few psychologists but it was very short-lived.
Mother of Isaiah, 17
You have to claim them!
Mom: With Jess, after transplant, she would say “the lungs.” She would say, “Oh yeah, the lungs.” And she was having so much trouble, I finally said, “You know what, kid? You’ve got to look those lungs in the airway and you’ve got to tell them who’s boss! And they’re your lungs. Nobody’s going to come and recall them, no one’s going to take them back, no one’s going to say, “Oh! We change our mind!” So you have to claim them.” When I noticed her start to say “my lungs” – and it took her a long time to get to that point, and I think once she started accepting that they were her own, it was like I could see her turn.
Jess: It’s hard.
Mom: And I couldn’t imagine. I think about it, and I think about waking up and knowing that somebody else’s body part is inside of me…you know, I can’t even wrap my mind around that.
Jess: At first it was really creepy. Whoa.
Mom: And that’s what I even had told our nurse. I said, “How do I get her to accept it when I don’t even know if I can?” And that’s what is hard.
Jess, 18, and mother
Depression and anxiety run in both sides of the family and consequently two of our daughters developed depression and all three daughters were diagnosed with migraines in the next few years. Severe illness and transplantation do not just affect one person in a family. They affect everyone and one must be observant of other family members, the patient and oneself as the caregiver. As a family we tried to keep everyone informed of current happenings and have open discussions often.
I wish that beforehand we had been informed more about how the whole process would affect our family and our son emotionally. Our son Nick went on to develop posttraumatic stress disorder after his transplant experience and battled with it for the next few years. Senior year in high school was the first year he spent the entire year in school during high school. Had we known how this was to affect him we would have gotten him into counseling earlier and medication.
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 Samantha 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…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…
Mother of Samantha, 22
She has control
It’s a very powerless place to be that ill and to have all those things happening to your body…what we wanted to do was encourage her that by giving back, she has control. By being an example, she has control. And in most ways, it was great. In some ways, it also put her in a position where she couldn’t quite be who she was because she had some responsibility: she would go into clinic and the transplant coordinator would ask her to talk to somebody else, or parents would just be drawn to her because she was so happy and so well and so positive that she gave them hope. And that was really empowering to Samantha, and she got hooked on that and that’s what got her through.
Mother of Samantha, 22