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.
Ask for help from friends
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.
Talking to other families
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.
Dealing with the psychological part
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.
Constantly asking questions
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.
Researching the disease
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.
How we help our child cope with IBD
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.
Varsity Volleyball Team
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.
Sense of Humor
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.