Stigmata

Hmmmm. I bet you think that has some religious connotation here, right? (I'm talking about the title, check the sidebar if you missed it.) Funny thing, that word. Showed up in a medical report for Joel. I didn't even know it was a medical word.

If you look it up in the dictionary, (A regular one, not a medical one.) you will see it under "stigma." Yup. Under stigma. And the first meaning of stigma is "shame or disgrace." Talk about connotations!

I try not to make too much of these reports, with regard to the words used, or how they make me feel. I get over them pretty quickly, for the most part. Still, they...rankle?

Yes, I want to receive these reports. I don't want anyone else to have access to any info that I don't have. In the interests of equality, fairness, and leveling the playing field.

And I understand that doctors feel the need to put in all their observations and they have to put it in medical terms, etc, etc. And medical terms are better than just using street language, of course. I prefer that, I suppose.

But these reports rankle. They are troublesome. And sometimes they sort of hurt.

Like the one I receive last week. Once again, done up by a doctor who is really great in person. Kind, relaxed, compassionate and caring. Just the kind of doctor I am relieve to see.

The report, not so much. For one thing, it said that Joel was most consistent with the "Zellweger's syndrome" end of the spectrum. That really gets my ire up. First of all, I disagree with it on a few levels. I hate putting Joel in a "box" on the spectrum when it is a SPECTRUM. Which means no one agrees at where to put the line because there is no clear line. Second of all, even if you did put Joel in a box, I think he's already passed the "line" for Zellwegers, as he is still alive at almost two years of age.

And the last, and largest problem I have with it is that I can not help but feel that medical staff treat my son differently when they hear it. They do. Of course. Because to say that Joel has Zellweger's Syndrome means that he is really going to die at any moment, but before he gets too much past two years of age. Look it up. I have never found a life expectancy for Zellwegers that went over two years of age.

I admit Joel could die in the next two months. But he could still be alive two years from now. And we really can't say. So I hate it that they pin the title on him, and then everyone treats him like he is on his very last legs. Maybe he is. But since we don't know for sure, I'd rather they treated him like he was going to live awhile yet. But now that report is there with the diagnosis stuck in once again for all eternity!

And here is the other hard part about the report. I'll just quote it. "Typical stigmata of the Zellweger spectrum syndrome with high forehead and hypotonia, flat face...facial diplegia."

Admission: I have only a vague idea about what some of those words mean. But they make me feel both sad and annoyed. Why must that get pointed out? Does it matter at all? No. We already have our diagnosis, and how Joel looks really has no importance on his health at all. (by the way, even my spell check was baffled by "hypotonia" and "diplegia.")

It is a doctor thing, this need to put all observations into a report. I've seen these and similar words before, on other reports. But they are... ugly. Aren't they?

Because I think Joel has a beautiful face. I think he has a cute little face. I think if you were not looking at him "medically" you would never notice a high forehead, or a flat face. Maybe that is just a mother's love. But still. Take a look at his video from several blogs back and tell me. Isn't he really just the cutest little thing?

I wonder, now, how mother's of children with Down's Syndrome feel. Do they have to read "Mongoloid features" in every single report they read? I wonder if any of them ever take that report and hold it over the sink while they take a match to it? Kind of like I'd like to do to my report right now, but I'd never dare do with any medical type document!

Because final diagnosis is never based on anything like facial features. You need to put real science behind it, and anything as vague and subjective as how someone looks is just not valid. So why mention it over and over?

I mean, can you imagine if it happened to all of us? I go in for my annual doctor's check up and my doctor fills out her report. And in it I find in medical language noting the unusual dent in the back of my head? Or that I have a square jaw? Can you imagine?

How about "Patient exhibits hair loss correlating to age." Or "Skin shows loss of elasticity common to those undergoing menopause." How about "He has an irregularity in the symmetry of his nasal bridge that correlates to previous injury?" Or "eyebrows show asymmetry due to over plucking?" I'd give more examples, but I'm already stretching myself trying to even sound medical in my descriptions.

But I hope you get my point. What if every time we went to the doctor, they noted our faces and commented on any points that did not fit the "normal" type of face? Don't we all have those? How would we feel reading about our high forheads, or big noses? What about our wrinkles and warts? That our eyes are small and close together? Or that our lips are thin? Can you imagine?

I'm glad they used Joel's features in the beginning, to help point them in the right direction for tests. I just don't see why they have to keep pointing them out, as if a hideous deformity were the real problem Joel has. It's not like they are plastic surgeons who are planning to correct something. So why does it matter?

And why do you need to put poke that little pin into my heart, that little shock of pain, every time I see that you have notice that something about Joel's looks doesn't jive with "normal?"

I really wish that they could start their reports like this: "Joel is a sweet little boy with long eyelashes and a button nose. He is very good-natured, and was patient with me while I handled him." It's not very medical and it sure is subjective. But it would serve a purpose. It would make me, his mom, feel good. And it would show that during the appointment you saw a little person, instead of a patient.

Which I knew the good doctor did. Like I said, in person: fabulous! Great bedside manner. Maybe I should be the person to edit the reports, though. Personality: A+. Reporting: D- (It's the teacher in me.)

So I thought of something I'd like to do. I can't take a match to the report. (Ok, I can, but it might not be very wise, and there would still be copies in other places.) But I can do something else. I'm going to put together (when I have time) a blog page 'tribute' to Joel.

I don't have to wait until he is gone to do this. I just want to celebrate how cute and sweet my little boy is. So I'm going to try and find the best pictures I can, and maybe write some stuff to go with, and make up my own report on Joel. And replace some of those words from that report with what I see, when I look at my boy.

So that the 'stigma' has faded out of my mind and heart. And what I remember instead are the marks of love that are being etched every day by Jesus. Not visible in a physical manifestation. Rather the stigmata that are only visible in our hearts, as God etches His marks. Through pain, compassion. Through sadness, patience and hope. That our souls might have the privilege of growing like Jesus.