I’m no medical expert, but I’ve unfortunately spent more than my fair share of time in hospitals with my son who suffers from a GI condition. Here are some things I try to remember—to stay sane, to be a good advocate for my child, and to get out of here as quickly as possible.
1. You’re not the expert, so don’t act like one. I am a bit of a sponge around facts—I pick them up, swish them around in my head, give them a good looking over. I develop opinions. But the thing is, I’m not a doctor. I don’t have the experience to discern the best options. I don’t even know the best place to start. My job is to let the doctor be the doctor.
2. You are your child’s advocate, so act like it. If the doctor is the expert on medicine, I am the expert on my kid. Between my wife and I, we have observed, in excruciating detail, the progress of his progress and his setbacks. While I have to respect the doc’s expertise, (s)he has to respect my experience. And we both need to respect …
3. Your kid is the ultimate authority. It’s his or her lived experience. I often think I know what he is feeling. And I’m often surprised when I let my son answer the questions about his lived experience. Especially about pain. The point is, my arrogance is thinking I know you better than you do … well, it’s not my best me. One way to get back there is to remember #4.
4. In a hospital, somebody has it worse than you. I’m not saying your suffering doesn’t matter. Or that this is fun. Hey, every parent and every child is having a shitty day in the hospital. Nobody is excited to be here. But especially with the younger kids, bringing them a smile or some joy is essential—not just for them, but for me. And that goes for my dealings with parents, too, who so often are dealing with burdens and despairs that they just don’t want their kid to know. Everyone carries a burden. Even the staff, who make the tradeoff to be around all this suffering in order to help with it—to alleviate it, to cure it, or just to bear it. It’s sacred space and time—and I’ll be happy when we’re out of here.