God’s Image. Whose Standards?

Caedmon has discovered his birthmark.

The first time I noticed that he was aware of it was after our last laser treatment. His face was purple-spotted (as it always is after a treatment) and he saw himself in the mirror and said, “What’s wrong with my face?”

In the moment, it was surprising to me, and I didn’t really know what to say to him. I hadn’t really prepared myself for that conversation. I explained that the doctor was helping us with his birthmark and that the dark spots would go away and it would be just like normal soon. He seemed to accept that as an answer and move on.

He asked about it several more times before the purple bruising faded, and seemed to be satisfied with the answer I gave him.

What struck me about it was that as a 2 year-old, he asked what was wrong with his face. I know he looks at other kids and doesn’t see anyone else that’s “like” him in that respect. And I know that as a culture (and as regular people), we see things that are not like others as “wrong.” Not necessarily in a bad way, but they’re just not “right.”

People have commented about Caedmon’s PWS or asked about his treatments with a hushed tone to their voice, as if maybe it’s not something we should talk about in front of him. And I don’t blame them. They aren’t sure what to say sometimes, and aren’t always sure how to approach it. I never want anyone to feel bad for asking about it. But the honest truth is that there’s no reason for us to be secretive or embarrassed about it. It’s not like we could hide it from him even if we wanted to.

Here’s the thing. I don’t ever want Caedmon to feel like there’s anything “wrong” with him because of his birthmark. Because the truth is that God gave it to him. And he was made in God’s image. Now, I’m not saying that God has a mutton-chop port wine stain on his left cheek (Wouldn’t it be cool if He did?), but you get my point. Because Caedmon is created in God’s image, I want him to understand that his birthmark is not a mistake by or a surprise to our Creator.

(I also don’t want to pretend that his PWS is in any way equivalent to the many horrible illnesses and birth defects other children and families have to deal with. Because it certainly is not.)

That being said, I’m really not sure how to reconcile the laser treatments with his little mind. It’s true that we have pursued the treatments for medical reasons, not cosmetic ones. It would’ve been a struggle to decide what to do if it were a cosmetic issue. Because if we believe that God made him perfect in His image, why would we want to change things so that it was pleasing to our eyes? It just so happens that the medical treatment necessary does change the appearance of the PWS and makes it more acceptable to our world’s standards.

And yes, those are some big concepts that his little self probably can’t grasp yet. But I don’t want to be caught off guard again. Because one day a simple, “The doctor’s helping us with your birthmark. It will look like normal soon” won’t cut it. Especially when other kids start asking him about it.

Just last week, Caedmon asked me again about his birthmark. This time, I was a little more prepared. I explained that he had a birthmark on his face and that meant he was born with it. And he was born with it because God gave it to him – especially for him. I then brought him to the computer and showed him the photos that I’ve been taking each month, showing the progress of his treatments. He was able to see himself in pictures with the birthmark, I think, for the first time. Meaning, I think he noticed it in photos for the first time. I showed him how each one got a little bit smaller and lighter. And that the doctor needed to help us with it so he could stay healthy.

He nodded and said, “Otay” and we moved on to something else.

Half of it probably went over his head. And that’s ok. I’d rather provide too much information than not enough. I don’t ever want him to feel ashamed of his PWS. I don’t ever want him to feel like we’re not honest with him about it. I also don’t want to make it a big deal. It’s part of our life. It’s normal to us. And it’s a gift from God.