As a whole, I would like to say that it hasn’t really affected us at all; that we just kind of deal with it as it comes, as just another thing. But I think all of us are more careful with what we say and with what we do and are more careful around him in a lot of ways. It’s kind of weird because it doesn’t affect you as whole, but on an individual basis with him it affects each person differently. But as a group, as unit, we do the same things– nothing really changes.
A Bad Day for Five People
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.
Behaving Under Pressure
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.
Making it Better
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.
He has two older siblings. When he was diagnosed, one was away at camp and one was traveling. It was very hard to make them understand exactly what was going on, because he didn’t have any symptoms. It was hard to explain to them that the pain had been real, that the surgery was real, and that he had a real problem. Everyone had just been making fun of him. I think that they’ve since come to understand it, but visibly there was nothing wrong with him other than the fact that he was on a lot of medication. I think that was difficult for them.
One of the things that we did the first year Paul was sick was to buy our other children gifts. Whenever Paul is in the hospital my younger daughter gets some sort of treat– when she was young she got toys to make up for it, and now she wants money. In her own way she takes on certain responsibilities when I’m not there, so she gets a treat. I also paid my older daughter for babysitting time, so that she was earning money taking care of her younger sister while I was with Paul in the hospital. We felt like this was appropriate, since it was as if we were hiring her to take care of her sister. I think that’s helped ease a little of the pain of having a disruption in their lives.
I think Paul’s illness has changed our family dynamics quite a bit. He gets carsick very easily, so whereas before my oldest daughter used to get to sit in front, now all of a sudden he has to sit in front. She’s gotten sort of used to that. But it still bothers her a lot, and I know she can’t wait to drive, because then she gets to sit in front and drive. Also, he’s missing a lot of school, so his younger sister is like, “Can I stay home too?” There have been times when she’s said, “I wish I was the one sick and I got to miss school.” I think that’s the normal stuff that goes on, but it takes some juggling.
Advice for Siblings
The most important advice I could give to other siblings would be to be flexible, because sometimes Tim will have a bad day or a bad night or a bad week or something and that carries over into his attitude about everything. It’s not just an isolated event. You really have to be able to know that he’s angry or upset not because of something you did but because of something that he can’t control himself. It’s really hard, especially for me, because he’s one of those kids that can be kind of obnoxious sometimes on his own. It kind of magnifies it and makes his nit picking and whining and whatnot even more intense. But you really have to understand that it’s not his fault. You kind of have to be able to deal with it and to go with the flow. Know that it will all play out in the end.
Family and Friends
It’s been difficult for our family. [She] ends up getting the attention– you just can’t help it. Your child is in the hospital, and you end up dropping everything else in your life and focusing on that. Laura has a younger and an older brother. The older brother is at boarding school, so he wasn’t affected as much. He kept his life pretty much intact, but Laura’s younger brother was clearly affected by it. There would be gaps– weeks when Laura would be in the hospital, and I’d be frantic. Her father and I would alternate nights at the hospital. We’d have to take our younger son off to a friend’s house, or bring in a babysitter. I know it’s been really difficult for him. We’d be tired, and our minds and lives would basically be on hold. You sometimes call friends last minute, and they can’t come over.
The upside is that you do find out how many friends you have, and your friends do come around and support you. I often saw the glass as half full, but there is a whole other side of life that you get to see when you’re put into a traumatic situation. You connect with other people suffering in the hospital. You realize how lucky, in fact, you are, and you empathize more with other people. You realize how extraordinary the hospital and the caregivers are. It makes you feel very fortunate. You also prioritize; you realize that when you have your health you’re in the game, all of these other things don’t matter. It makes you respect and appreciate your life. When I was in the hospital with Laura, I also saw the glass as half full; it was time that I spent with her; intense, beautiful time. It’s the same as the time you spend with your family, you’re all in this thing very closely together, and it does knit you together.