"He looks just great..."
"But, he looks healthy..."
"He does't look like there is anything wrong with him..."
"He seems fine to me."
If you have a child with a chronic health condition or disability, you most likely have heard statements like this. While certainly there is a place for comments like these, they can be difficult to hear again and again. It is hard not to feel like people are wondering why you think your child is sick, when they look so healthy to them. For five years, I have heard people say that Elijah "looks" so good. For five years, he has walked around with a life threatening illness...he has had lungs that weren't efficient, he had blood that didn't make the right infection fighting cells. He wasn't "great" but he may have looked great. Beneath the surface, he was fragile....
It often feels like people are doubting what I am telling them about my child when I hear them say he looks fine. The residents and some doctors here seem to like to say how great kids are doing. Great compared to what, I ask? So, if "great" is a rash all over your child's body, an elevated temp for 6 weeks and blood cultures that show adenovirus..then I would hate to see what "looking good" would mean. And if someone dared to say that my child was not doing well, I would hate to think how bad that would be.
A point of reference is necessary when making a statement like, "He is doing really great." Compared to what? Compared to healthy? Compared to other transplant kids? Compared to other transplant kids with complications? I am not sure what to think. But I do know that I wish people would tell me...
Give me perspective. Talk to me like you are not worried I am going to overreact or underreact. Listen to me. Hear what it is that I need from you. I need some facts. They won't scare me. They are just facts. Tell me when you don't have a clue. I can handle that. I can handle the truth...but I don't want to hear something that sends mixed messages...
Then I don't trust you much anymore. I cringe when you come into the room because I know when I am going to have to navigate through the "pointless' to really find out how my son is doing. I don't even want to ask my questions or give you my observations, because you are so quick to make me feel like I don't know what I am talking about. Listen to me...I can give you a perspective that no one else can. As a doctor, you want measurable data..you want to pour over lab results, CT scans and other tests. You want facts. That is all I want as well. I just need you to add your expertise in the interpretation as you give me your best guess. And there is another thing....I need you to acknowledge that all of this is just a best guess. See, I don't expect you to have all the answers, I just want you to give it to me straight...
But, don't keep saying "He looks just great...." when you know that how someone looks on the outside may have nothing to do with what is going on on the inside. I know you don't always realize that the messages you send can be so powerful....not only what you say, but what you don't. You can be a competent pediatric health care professional, but if you don't work well with parents as well as children...if you don't embrace what it means to provide "family centered care," then you just will be mediocre. And I suspect that none of you entered medical school with dreams of mediocrity.
I know this is a training hospital. And many of the doctors we see are still in training. My intent is not to criticize, but to share a perspective from a parent. It seems to be much easier to learn these skills right from the start then have to relearn them down the road. So that is my two cents...
(p.s. Elijah's transplant doctor, Dr. Angie Smith, started her two week rotation on the unit today...this is so excellent because it seems like we have to start over everytime another doctor goes off their two weeks stint here...we don't have to start over this time ...she knows him well and she listens and communicates how things are going in a realistic and positive way--she says she sees good signs as he fights the virus...now that is what I want to hear!)
