A letter from Nathan to his doctors

Aug. 22, 2010

This past week, we had our appointment with the CP clinic. In theory, it’s supposed to save parents multiple trips to Children’s Hospital on multiple days by seeing all their docs/therapy heads/specialists at one time. In reality, it’s a 3-4 hour appointment, sometimes with someone you know, sometimes with the person who’s there filling in for your person that day.

It seems as though everyone asks you the same questions over and over, pulling on the same muscles, coming to the same conclusions as if they discovered it themselves. Most of the doctors can’t seem to get in-and-out fast enough. And the therapists, nutritionist and hospital resource specialist seem to get interrupted by the doctors trying to pop in when they are free regardless of who else is in the room.

By the end of the session, the kiddos are exhausted (most having missed their naps) hoping the twisting, stretching, and bending stops more sooner than later. We left this time with no bad news, but one doctor who thought Nathan would need surgery 6-months ago, thought the same x-ray showed what great shape he’s in this time around.

I describe this doc as giving a drive-by diagnosis. He enters the room, rattling off something, (and you’re not positive if he’s talking to you) stretches the kid one way, then the other (still talking.) He then moves to another part of the body to confirm what “he already knows” and heads back to the door about the time he’s run out of breath. With his hand on the doorknob, he’ll ask if you have any questions, and before your head stops spinning says, “Great! See you next year.”

To him, and some other doctors we’ve “broken-up” with over the last couple of years, I dedicate this message:

Dear Doctor,

My name is Nathan. I’m a 4 and ¾ year old boy, who likes doing boy things. I play with cars, watch cartoons, make messes (especially with my food,) but most of all I enjoy playing with friends and family. If the weather’s nice and I can ride my trike, it’s a good day. I’m learning to walk, trying to communicate, I go to school and I learn new things everyday. Things are harder for me, but I try my best. I may not do things like a “normal” boy my age, but it doesn’t mean I can’t “just it’s typical for someone with PMG.”

Why is it that when you see those three letters on my chart, the first thing you think of is all the things I can’t, or won’t be able to do? The truth is, when you say I can’t, it only sparks a challenge for me to prove you wrong. How many people look at the letters after your name and think, “Oh, you must drive a fancy car, like to play golf, and think you know more than anyone in the room about PMG,” and then say the same things to your face? I understand that providing false hope is a slippery slope, but tearing down cautious hope which we build upon is just as damaging.

We seek knowledge and education from you. Doing nothing is not an option. Surgery is a word we want to hear as a necessity, not as a choice. We don't have all the time in the world to dedicate to one area of improvement, but if there is something we can work on, give us direction.

Don’t be a limiting factor for me. I may not be able to run a marathon, but every runner had to learn how to take that first step. There may tasks that I won’t achieve, but that doesn’t mean I can’t try. I am a warrior fighting many different battles. I have an army of supporters on my side so don’t stand in our way.

I am a person not a case study. People learn from me as much as I learn from them. I am part of a community of families both near and far who talk about good physicians as well as bad. We often learn more from them than we do from you. We adapt our own activities, find strength in new ways, and make bigger strides than most anyone would expect.

We know you don’t hold all the answers so don’t think that we hold your responses as gospel. We don’t see you as a miracle worker, we go to church for that. God’s grace reaches all of us, regardless of our abilities. It’s by that grace that we live and learn each day. Help us to maximize our talents so that the world sees that God doesn’t make mistakes.

If you take the time to get to know me, you’ll see a lot more than a diagnosis. My eyes will tell you the stories that your ears cannot hear. You’ll sense things your eyes are blind to. When you find out all the things I am and forget the things I’m not, I think you’ll see my life is a lot better than what you think.

If you still like getting all your information about PMG from the Internet, have I got a website for you.

Nathan

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